Our Story of Genetic Testing & IVF in Germany

Facing a possible diagnosis of a fatal genetic disease, pursuing genetic and IVF wasn't a "choice", but the only way I could spare our children the heartache of an incurable disease. This video was a tough one to make, but we finally feel that we are ready to share.
For more information on Germany's Genetic Testing Committee (Ethikkommission für Präimplantationsdiagnostik), visit: www.aerztekammer-bw.de/20buer...
For more information on Germany's Universal Healthcare coverage of IVF and Fertility Treatments, you can see an example at the AOK Insurance Company: www.aok.de/pk/uni/inhalt/kuen...
Episode 54 | #genetictesting #IVF #ethikkommission in Freiburg im Breisgau, Germany | Filmed April 20th , 2022
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Quick jump to your favorite section:
00:00 Intro
04:24 My Family Tree & History of Genetic Disorder
07:28 Undergoing Psychiatric Testing
11:50 Afraid of Getting Tested in America : ObamaCare/Affordable Care Act vs. Trump
17:06 The Cost of IVF and Genetic Testing: Germany vs. USA
20:41 Germany's Genetic Ethics Committee (Ethikkommission für Präimplantationsdiagnostik)
28:08 The Moment of Truth
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Originally from the Midwest of the USA, we moved to the #blackforest in 2013 and quickly embraced #expatlife. As American expats living in #Germany, things weren't always easy, but we've grown to love our life in Germany. We started this #travelvlog​ to share our experiences with friends and family, and to help those who are interested in moving overseas! Whether you are interested in moving abroad, working abroad, studying abroad, raising a family abroad, or just want to #traveleurope, we're here to give you a first person look at what lies ahead. 😊🎥🌎

[@Pewtah]

What an interesting and open-minded video! Well, to your question: I had certain symptoms, then had some tests and the doctor would not tell me what was going on. (Afterwards I got to know that her behavior was and is not legal, because in Germany a patient is entitled to the result of the diagnoses - with a few exceptions, which were not present in my case.) To the next doctor I said: "I can handle a severe certainty much better than an uncertainty. Please tell me everything what is going on." And he replied, "Ok!". So I received a diagnosis of an incurable disease with severe disabilities in the future. That diagnosis was a huge game-changer in my life. I, in my 30s, then decided not to bring children into the world. The relationship with my partner broke up. Also my attidute to life and my own death changed. Today I am happy about this decision, because the severe disabilities have come and I am in good care (German health care system rocks!).

[@TypeAshton]

I'm so sorry for the incredible toll your diagnosis took on you and your relationships. This is something that Jonathan and I also had to have a lot of deep discussions about. Should my diagnosis been different, it would have resulted in a great burden for him and out children down the line. It is a side of this "coin" that not many people think about.

[@patrickhanft]

Hey Ashton, thanks for sharing such a personal and emotional story. For me that was very moving and I admire your strength to have gone through that process and telling it publicly. And I also admire your strength to even be able to praise "Germany's recognition of the incredibel ethical considerations that are at stake" regarding Präimplantationsdiagnostik, while on the other hand you were rightly and absolutely understandably frustrated with this bureaucratic process. I absolutely don't want to argue against your case or anyone in a similar situation persuing everything to making sure, their children wanted to be healthy, but I want to add to all your discussion a little background on Germany's reluctance to allow genetic testing or "Präimplantationsdiagnostik", for anyone wondering. This is, as so often, rooted in Germany's dark history. The Nazi regime not only propagated the superiority of the German people and certain "races" and the inferiority of jews and others. The Nazis also propagated an ideal of strength and a "healthy body". In their eyes there was unworthy life and this lead to many terrible crimes. I don't want to go into details as I'm neither qualified nor want to cause too much emotional disturbances. But this in the end means, that Germany's history has shown to people with disabilities, to people with genetically inherited diseases, that their universal right to live is not always universally guaranteed. It can be questioned, their life could be considered less worthy or unworthy than the life of other humans. This historical debt of Germany is to have declared some life less worthy than other life. And therefore all very understandable and also very ethical "right" efforts to prevent avoidable suffering by doing such diagnosis on future life, also questions the life worthiness of people living with such diseases (like "why did your parents not prevent your existence?" - humans can be really cruel). For Germany to find the right balance between living up to its responsibility towards its history and the universal right to live on one hand and the responsibility towards future life on avoidable suffering, is not really an "achievement", it is a necessity, and it doesn't always get it right. And it is hard and certainly very frustrating for anyone trapped in these situations. To anyone in such a situation, I would like to express my deepest sympathy and best wishes. I think it is absolutely fair not to like Germany's system, but maybe this perspective helps to deal with it even a little bit and it explains a little bit better, why it is how it is.

[@TypeAshton]

Yes, Germany's history with genetics & genetic screening certainly plays a part in the committee today. I personally admired that the team was not only made up of experts (physicians, researchers, ethics professors, lawyers, etc..) but also patient advocates and special advocates for those with disabilities.

[@BlissLovePeace]

Doing excellent research is one thing, being able to do an outstanding job to present your findings professionally and understandable to a public audience is another. You have the talent and skill to do an excellent job concerning both, and that combination is rare ... and appreciated. And openly talking about being potentially personally affected is a whole other story. Thank You!

[@TypeAshton]

Wow! Thank you so, so much for such a kind compliment.

[@pruthroberts]

I feel fairly sure I know which disease this is but won’t mention it to respect your desire for privacy. I had a friend in college ( a long time ago) whose mother had it. I met her mom in the midst of the disease. Very sadly, my friend did end up manifesting it years later and I think one of her brothers did, too. I’m so happy and relieved for you. What a wonderful ( but emotionally complex) impact this must be, having this frightening burden lifted for you. Sending you love.

[@kemaldjakman183]

After spending 35 minutes of my life watching this video, I got to think about the question 'Why do I kept watching many of your videos'? Truthfully, I have nothing in common with you and your family. I appreciate very much the way you explain and show things. I appreciate very much the preparation and research you made in each videos. I even appreciate the diction you use. But this video have made it clear for me, somehow you made me feel connected to you. Wish the best of the future for the Black Forest Family.

[@TypeAshton]

Thank you so much! This means a lot to us.

[@Chuulip]

I have a PhD in genetics myself and despite not being in active research anymore, these things are the reason why I love this field so much. Genetics is incredibly fascinating and interesting and it's not just a "for fun" thing to learn, it actually helps to make people's lives so so much better. Many diseases are not curable as of yet but, as I always put it, "we're working on it". Specifically autosomal dominant diseases that manifest on top of it all only later in life are vicious and it has been but a couple of years that genetic testing is actually an option of people. As you said in the video, genetic testing used to be extremely expensive, but scientific advances move crazy fast. In my old labs some members just tested themselves for fun for interesting genetic variations (for example, my Japanese colleagues wanted to know if they had the gene mutation that caused them not to hold their liquor well, as is very prevalent in Asian people, but not so much in non-asians. It's all so easy and fast nowadays, everyone who works in a genetics lab can easily test themselves for genetic details, almost without cost). I'm glad that you were spared of this disease! With the improvement of scientific advances these kinds of diseases will soon be a thing from the past hopefully. And if someone gives you shit about it in the comments or elsewhere, you know where your middle finger is

[@TypeAshton]

Science is such an amazing tool and we look forward to so many of these terminal illnesses finding cures soon. Thank you so much ❤️

[@dikkiedik53]

What an impressive video. I enjoyed it very much and it brought emotional moments to me. I have 1 aunt, 2 cousins and my sister that were unable to get children. Our daughter was 13 when she got the message that when she ever wanted children she should go to the highest possible IVF institute in the Netherlands and not start trying to get a child the natural way. It took a couple of years and the 7th embryo was our oldest grand daughter. 3 years later she got a sister, from the same batch. 2 high intelligent good looking sisters which are our life after our death and our every day pride and joy.

[@monicasweer7253]

I would love to know where she went to the Netherlands and how they made this miracle happen. You are right, so many miss out and that knowledge may chamge a life. Thank you.

[@TypeAshton]

That is amazing, I am so glad that IVF was a successful and joy-bringing tool for your family. ❤️

[@tillsmellmann2538]

This ethics topic is in germany so important because we learned from our history. The facist in germany under Adolf Hitler killed the disabled and ill and want to play God and create a "arian race". Therefore germany is in this topics very sensetiv.

[@alexanderkupke920]

My thought as well. When it comes to such testing and genetics based decision making, which i think is perfectly reasonable in the specific situation, in general people start to think of what kind of genetics had been tried to pursue at a certain time. To some Dr. Mengele may come to mind which was something that of course is nothing like this procedure today.

[@SchmulKrieger]

Adolf Hitler never established a fascist regime. LoL, another figure who cannot differentiate between Fascism and Nazism. in fact, most Nazis didn't like the fascist, one reason was that Austria was in fact a fascist country allied with Italy, and Italy openly stated to declare war on Germany if they want to anschluss Austria. that led to the murder of fascist leader Dollfuß by the Nazis. and in fact, Fascists want to establish a class based state. in Austria it was a meritocapitalist class state. in Italy an imperialist doctrine with the head as a King, which was Vittorio during the whole war. also were Italy semi-Entante member.

[@karstenkailer4669]

@@SchmulKrieger Man kann sich auch dummdifferenzieren. Hitlers Verbindungen zu Franco, Mussolini, Codreanu und sonstigen Faschisten sind doch offensichtlich, auch wenn man bei allen Achsenmächten spezifische Unterschiede findet. Der Unterschied des NS zu anderen faschistischen Regimen war nicht der Antisemitismus selbst, sondern dessen Vernichtungswahn, der zu Auschwitz führte. Von allen beschissenen Faschoregimen ist der NS daher also die unterste Schublade. Ihr "Beitrag" nahm allerdings keinerlei Bezug auf die vorherigen Kommentare zu Euthanasie im NS. Ihr "LOL" zu Beginn ihres Kommentars dient Ihnen vielmehr zu sinnloser Differenzierung.

[@SchmulKrieger]

@@karstenkailer4669 Euthanasie ist auch in den sogenannten Demokratischen Staaten während des Krieges und nach dem Krieg teilweise Praxis. Zweitens, nein, der NS hat aktiv den Faschismus bis 1938 bekämpft. Ansonsten ist der Sozialismus der UdSSR ebenfalls Faschismus. Die Ähnlichkeit zwischen NS-Deutschland und der Sowjetunion sind nicht zu leugnen. Vielleicht sollten Sie einmal Geschichte studieren, bevor Sie Quark reden.

[@teardrop-in-a-fishbowl]

We even have a "Ethic Council" which is involved when it comes to introduce new laws, or changing existing ones. What bothers me a lot about this council is the (still too much) influence of the churches, religion! That holds back Germany from introducing new, better laws about genetic search programs, abortion rights and the right to end your life at any time in your life (also the impunity of helpers in this process)!

[@daisyyvonnedahlgren2347]

Ashton, Thank you for sharing this difficult subject with us. I was crying by the end at first with fear for you then, with Joy for the result. Your courage is so inspiring. Greetings to your lovely family from the left coast of Canada.

[@TypeAshton]

Thank YOU so much for your kind words. ❤️

[@dennisblankenship1310]

As a lifelong American, I was constantly thinking, throughout the video, of how my wife and I would have not been able to afford the enormous costs we’d incur in the US. We would have never been able to afford it, even if it was available when we started our family. It’s the first place my mind goes whenever health care needs are discussed. This was a very heavy topic, which I think you covered with extraordinary deft and compassion.

[@Andrei2patrU]

I am not married, I don't have children, I am male and to my knowledge, I don't have any hereditary disease. All that considered, I found myself shedding some tears of happiness towards the end of the video: 1. for you, 2. for the fact the healthcare here helped solved yours and helps solve countless others' problems and 3. for the team at Freiburg University Hospital. What I wanted to say through this is that you've put together an excellent video about the topic. It was factful, considerate and touching and I can't think of a better expression of thanks towards the team at the Universitätsklinikum Freiburg than what you've shown just now.

[@TypeAshton]

Wow thank you so, so much. We are so grateful for their care and guidance. We cannot speak highly enough of their services.

[@meicke621]

Thank you for your courage to openly share such a topic like this and your openness regarding this it.

[@DoloresMey]

Herzlichen Glückwunsch! 💚

[@TypeAshton]

Thank you so, so much.

[@calise8783]

My partner and I went through Ivf in Germany. Our children are now in their late teens. I do remember going through mandatory genetic counseling and testing as part of the Ivf process. But we both did not have any known issues. It obviously was not as in-depth as your testing. Nor did we need to go through the OGD aspect. I feel lucky that I only felt the emotional aspect of IVF. For me the physical was not actually bad at all. My heart goes out to everyone dealing with infertility and/or genetic issues and whose dream it is to have a family.

[@TypeAshton]

IVF and infertility is often a silent struggle because not many feel comfortable sharing and it can feel very isolating. I am thrilled that you and your partner were able to have happy heathy children with this tool. ❤️❤️

[@patriciamcmurray4272]

You are so brave in getting tested. Thank you for sharing. I applaud you for not wanting to pass the disease down and for sharing your experience with us. God Bless you.

[@mummamarsh1180]

Hello Ashton, thank you for sharing your personal journey with the view of helping others who may need to go down a similar path. I was so relieved to hear your result was negative . As always, your research is thorough and delivered with authenticity. Bless you! 😇

[@TypeAshton]

Thank YOU for such kind words of support. ❤️

[@mohammeddavidzhang-singh5846]

Wow, I say that's your best and most important video so far. Great work!

[@TypeAshton]

Thank you so, so much. ❤️

[@Ditto787]

Thank you very much for sharing this part of your story, especially given how personal it is. I've lived a lot of what you've described in parallel, though our stories diverge slightly. My family did not have a documented record of any specific illness name, and although thankfully my diagnosis is not typically one with a fatal outcome, unlike you, I would very likely test positive. It's been really interesting and thought provoking to hear your perspective on this while going through the genetic testing and counseling both for yourself and as a then yet-to-be parent. I can also attest that many in the USA are still to this day still hesitant to, or can't afford, or won't try to get genetic testing, for fear of financial and insurance repercussions/retaliation, despite the ACA not having been repealed. For those financially able, the life insurance piece is a good tip. Thank you also for discussing some of the ethics of what goes into considering having a biologically related child when genetic issues are at play. It is something I am thinking about deeply while considering having a child as a disabled person whose condition is inheritable, especially given people's distaste (to put it mildly) at anything disabled/disability adjacent. For anyone considering genetic testing when it comes to their potential children, I'd very much urge them to seriously think at length on these ethics, and as others have commented, the complicated history behind genetic testing and eugenics and living as a disabled person.

[@youtubeaxel9030]

So brave to share! Thanks. May this video help many families in similar situation ! Viel Glück für Euch

[@TypeAshton]

thank you. ❤️❤️❤️

[@rosshart9514]

Your channel is so so well done, by content, research, presentation and sometimes really moves me. Simply outstanding what you do on YT!

[@TypeAshton]

Thank you so, so much. We really appreciate all of your kind words of support.

[@berulan8463]

Thank God there was a happy end! This was one of - if not the - most moving and bravest videos I've ever seen on the internet. And it is - as always - extremely well done, I'm really impressed in many ways.

[@TypeAshton]

Thank you so, so much. ❤️

[@shawk007]

I really appreciate your videos. You have a unique way of presenting your topics, one that does manage a successful balance of fact based information sharing with how this is personally related to your life. When I started watching your channel it was because of the cultural difference angle, but since then I grew to appreciate your viewpoints on life, your stories that you tell, just in general. You are an incredible compassionate family with such a sensible and positive direction and outlook on life, especially when dealing with the challenging parts. It feels - to me - so very relatable, inspirational and reassuring on a personal level. You - We - are not alone in this! Thank you for sharing.

[@TypeAshton]

Thank you so, so much. I am always happy to hear when our videos can really touch someone or help in some way. ❤️ Thank you for following along on our "adventures" and supporting us.

[@Cowboy-in-a-Pink-Stetson]

A very courageous video. I never new about these things and find myself really positively educated. Thank you.

[@TypeAshton]

Thank YOU for your kind words ❤️

[@vicon8102]

Hi Ashton: I've watched several of your videos and this is my first comment. I currently live in Utah and 22 years ago I married a German from Nuremberg. We visit Germany often as my husband's family of course all live there. I just went through some genetic testing as I have just finished my 2nd round of breast cancer. I felt your sense of relief as my testing was negative for all the markers of inherited breast cancer genes. I enjoy your channel. Thank you.

[@lcopetti]

Wow. This video was difficult to watch. I almost cried when you shared the result. I am feeling very happy for you. I wish you all the best and have a great life with your family.

[@TypeAshton]

Thank you so much, we are very very lucky.

[@Mike.Muc.3.1415]

Thanks for another interesting episode and for sharing your story.

[@TypeAshton]

Thank you ♥️♥️

[@Mir_Man22]

You´re a really courages person to share such a emotional thing that is truly personal. From your eyes shiny by tears, it´s clear to see, that it´s still not easy for you to talk about it. 😪 Luckily it ended with a happy ending.

[@courtneymcwilliams6571]

We've been following you guys from almost the beginning. We just wanted to say, thank you for sharing such an emotional and personal story. Your vulnerability is a testament to your strength and character. Also, thank you for shining a light on a topic that's very hush hush, this needs to be talked about more.

[@TypeAshton]

Wow, thank you so, so much. This comment made my morning. ❤️

[@James-is2dr]

Wonderful news. Thanks for sharing in such a well thought out manner.

[@TypeAshton]

Thank you so much.

[@sheatanner9935]

I don't know you or Johnathan, but I am incredibly impressed by folks who can share such personal stories. Not gonna lie, I'm a pretty squishy guy on the inside and I had to pause the video a time or two to fight off some tears. Congratulations on your diagnosis. I can't tell you how happy I am for you (and especially your little guy). Love and Rock N' Roll from California, digital hugs to you three!

[@TypeAshton]

Thank you so, so much.

[@wagelink]

it is the first time I see this video from you. I must have missed it. I find the video very honest. It is brave of you to make this video. I could see and feel the emotion.

[@gloofisearch]

I just cried with you both. What an incredible story.

[@TypeAshton]

Thank you so, so much.

[@jennyenge5561]

Dear Ashton, I can see, all the thoughts running thew your brain. Every time, I hear about genetic testing, I have to think about an old movie called :Gettaca. Still getting the shivers just by the title. As a person, working in medicine, it is a very sad but possible future for us. I hope for the best for you and your family! And wish all of you great times/adventures! ❤️

[@ruthghobarkar1431]

Hi Ashton, some month ago I started to look what‘s going on in your life in Germany. Some of your experiances I found interesting others amused me. I never expected that you would let your visitors - me to - participate so open and honest about such a sensitiv and emotional experiance as it can be seen in this video! Really, you prove a lot of courage and human power to do this. That I admire a lot. But at the other side there was a moment in this video I only wanted to take you in my armes because it touches me so much. At the end it very, very pleased me that now you know that you are free from this horrible threat. Best wishes and good luck for the Black Forest Family

[@CyberTom1965]

Thank you for taking me through this very personal and emotional journey (*wiping some tears away*) and congratulations on your negative result. Being an educated person and knowing about the existance of survivor's guilt syndrome will hopefully make it a bit easier for you to deal with it.

[@TypeAshton]

Thank you so much. ❤️

[@christianbraun5004]

I can't even begin to imagine the courage it takes to speak that openly about a topic both this complex and personal. You have my absolute respect for that.

[@TypeAshton]

Thank you. ❤️

[@thereallotharmatthae]

Well done, Ashton. Really interesting topic, and glad to have you here in the remote country of Germanistan!

[@danielw.2442]

Considering the topic "enjoying" would probably be the wrong word... but I don't regret watching the vid. It's rare to hear those stories, so thank you very much for sharing. ❤

[@TypeAshton]

Thank YOU ❤️

[@multirider8997]

Very complex topic, very serious, well put across. So happy you and the family are OK. 👍

[@TypeAshton]

Thank you. We are extremely fortunate with our outcome.

[@ton4eva666]

Thank you for the very interesting video, Ashton! And congrats to your negative results!!! Considering the debilitating hereditary disorder you have been tested for, I hope that the negative result brings a bit more of strength and power in all your future decision making processes. And more freedom too!

[@TypeAshton]

Thank you so, so much. ❤️

[@caromada7369]

My partner and I went through the same process. I can only agree that the whole Team in Freiburg was just so caring and made us feel as safe as we could. I am so happy for you guys!! Thank you for sharing your story, for all the people out there feeling alone.

[@TypeAshton]

They are SUCH an amazing team of people who have an INCREDIBLY difficult job. ❤️ I hope you and your family are doing well.

[@twinmama42]

I'm so happy for you and your family.

[@TypeAshton]

Thank you so much. We are incredibly lucky.

[@c.k.b.7024]

Gott sei Dank!

[@eisikater1584]

I always thought I was a tough man, but on your happy ending, I shed some tears. Tears of joy, that is. I know what fear and anxiety are as I had a lasting stomach problem once and went through all the diagnostics. The worst time are the days waiting for the lab results, and although I'm not religious, I felt tempted to pray, "Good Lord, let it not be cancer". It wasn't. Now all I can add is: May you have many happy and healthy children.

[@TypeAshton]

Thank you so much. I am also overjoyed that you did not have cancer. Wishing you all the best. ❤️

[@michaelnovotny261]

I feel very strong attched to your story by personal experience. It is very hard to go this way, as good and right it finally is. Doubts are always there, till it does at the end result in this great relief. As parents we DO care and I am really feeling with you! Blessing to your family. I do appreciate your corage. I'm happy for you!

[@TypeAshton]

Thank you so much. We are very fortunate for our outcome.

[@hape3862]

Let others be proud of their big military, their GDP or their "freedom" - I for one am proud that Germany does these human things like health care, ethics, refugees and so on right!

[@christianzacharias9159]

It's not as good as you think it is. There are at least tens of thousands of seriously disabled people who don't get support of any kind. If you get an illness that's hard to diagnose, the regular health system will simply let you rot in your bed or even die. Numerous bedbound people are wrongly diagnosed as psychosomatic and supposed to be able to work 100%, which is ridiculous.

[@Balleehuuu]

I have read and watch a good amount of information about the differences of healthcare systems around the world (not only because of professional interest), but hearing those terms of "pre-existing conditions" never really sink in my brain - I haven't understood the extent of what that can mean und simply thought about it as a problem when you wanna change your insurance company. Wow this is just not right, I am sad and kind of angry, because I am so used to the fact, that the most vulnerable need and get the most support from society...I really want to share this point.

[@svenbauer7178]

@@Balleehuuu I agree. Just want to make the point that this exact same problem (with the pre-existing conditions) also exists in Germany: For those people who have opted-out of the universal healthcare into a private healthcare plan. I guess about 10% or so of the population - typically those with a bit higher income. The German (somewhat questionable) "logic" behind this is, that these people should be financially strong enough to deal with it, no matter what. And at least theoretically: Yes, you could also go bankrupt due to medical problems in Germany if the insurance company "finds" a pre-existing condition you did not tell them when you signed the contract (or you could not remember but some of your doctor's might have it on record). I would say, as good as the German healthcare system might be, the way how it deals with private healthcare plans is pretty badly done in many aspects.

[@hape3862]

@@urlauburlaub2222 I don't know what you've smoked, but from whom does the American military protect us Europeans again? Russia? That Russia that at this very moment isn't able to defeat even Ukraine???

[@Balleehuuu]

@@svenbauer7178 I agree in the point that there should be "Härtefälle" / cases with special circumstances and I believe there are ... And I kind of agree to the point, that when you take the private plan it is also the risky plan (because nobody has to leave the public health care system).

[@JW-nh5or]

Knowing the truth can be the hardest way to get out of misery. It also can be the most rewarding and fulfilling. So I give my heart to all of those people who don't know yet but who are willing to. I also want to point out that going to a process like yours does not end with the test result whether it is positive or negative. But it is always a new beginning for yourself and for the people who are close to you . Thanks for sharing. Luv ya 💗

[@TypeAshton]

Thank you so, so much. ❤️

[@indrinita]

I absolutely love and appreciate your content. Thank you so much for sharing 💗

[@TypeAshton]

Thank YOU so much for your support.

[@nobodysgirl7972]

Thank you so much for sharing this personal and emotional story. I had a testing about a hereditary disease as well. Not as bad a disease as you seem to have in your family but still of course something you'd like to avoid. And even I was nervous when I got the letter with the result. And even I felt a bit guilty about being the lucky one. So I can somehow relate to this

[@arnodobler1096]

Difficult subject. Thanks for sharing, Ashton!

[@TypeAshton]

Thank you Arno ♥️♥️♥️

[@arnodobler1096]

@@TypeAshton 😍😍21:50 that also has a lot to do with our history, everything to do with genetics.

[@MyvIsLove2]

this is when a ton of laws and bureaucracy make sense here in germany. we can argue that there are areas in which they dont, but im glad they do it properly when it comes to embryos and genetic testing. i am so happy u tested negative

[@TypeAshton]

Thank you so, so much. We are incredibly fortunate for our prognosis and really appreciate the counseling and guidance that we received.

[@apveening]

"this is when a ton of laws and bureaucracy make sense here in germany. we can argue that there are areas in which they dont, but im glad they do it properly when it comes to embryos and genetic testing." There is one improvement I can think of and that even would fit with the German drive for efficiency: A list of pre-approved conditions for PGD. It was mentioned that this specific condition (which I won't name) was approved in all preceding cases, so having it on that list would have sped up things (and saved some money) in case the diagnosis would have been different.

[@eddys.3524]

Congratulations on your negative testing.. Further I admire the way you've told the story.

[@RustyDust101]

Thanks, Ashton, for being so open and frank with your personal history. See, THIS video is a perfect example of how and why I support genetic research. To help people recognize IF they are carriers of a genetic disease that can actively and negatively impact themselves or their children in a significant way. To ultimately remove those threats in a humane way if necessary. Not to make a choice about eye or hair colors, body shape or size, or such BS. All of that should be left to chance as this allows for the many positive occurences of positive mutative adaptations that might lead to a future generation being more resistant to a future variant of a disease, or other selective evolutionary pressure. Nor should it be done for maximizing the profit, or exploiting or even decreasing already dwindling resources more effectively. Signing a risk life insurance (as compared to a capital life insurance) is a very affordable means to provide for your family should something irreversible, or even death happen to the insured person. A capital based insurance once was an awesome way to provide a large chunk of money at affordable premiums sometime down the line, either as a one-time payment, or as a life-long pension. A risk life insurance is obviously based on your age, and known pre-existing conditions, especially ones that are known to cause serious illness or even death at a much earlier rate than for the average person. That you took out a Pflegeversicherung/ an insurance to cover your long-term medical (home) care costs just shows that you are a realistic person, able to look at facts, not deny them, and to react and plan accordingly. While it is not a happy subject to discuss, it is a necessary subject to discuss, especially when you know about such a possible genetic disease running in your family.

[@nancyrafnson4780]

I am very happy for you and your family that the outcome was so good. We haven’t gone through anything like that in my family but we do have a history of Type 1 diabetes which is a life-long disease once it is diagnosed. My sister has been type 1, insulin dependent and has been for 60 years which is a great rarity in itself. She is now 83, almost completely blind and her heart only operates at about 25%. She just went through a heart attack and mini/stroke and then caught Covid while in the hospital. We didn’t think she was going to make it but she did and is. Ack in

[@nancyrafnson4780]

Sorry - and is back in her own home with daily assistance with home care. Thank God and Canada that we have free health care. Love from the prairie heart of Canada. I wish you and your family all the best in the future.

[@HansWeberHimself]

Wow. Thank you. I’m a biologist, with child, with a debilitating genetic allele, and I am German, living in the US for a long time. I can relate to every single word, sister.

[@pmbn88]

It was very very hard for me not to look directly for the result at the end of the video, but watch the entire video. One of the reason is certainly, that this video was the hardest one for me to understand in english (i am german), but also it was very important to understand the details more than in other videos from you. I am thankful, that there no bloopers this time, because i would not have been able to watch them and laugh, because i was crying 🤭 As i think back the first time i recognized the channel it was the video about the Weihnachtsmarkt and i watched more from you to learn to understand videos in english and i am very intereted in bikes and all kind of content with bikes, i love watching all of yout videos and i am not missing anyone of them. Please keep doing this for a long time, i am a huge fan of both of you telling stories of your live, happy ones and "hard" ones 😄

[@TypeAshton]

Thank you so, so much. We are still amazed that our little videos are able to touch so many and we really appreciate your support. ❤️❤️

[@robertzander9723]

A very exciting and complicated topic that you present so wonderfully interesting and with many facts. I have no idea about it, so I think it's good to see something like that on your channel. Thank you for all your kind videos and being always so nice, wonderful to see you, you are a real great sweet family. Nice to have you here. Happy Sunday, greetings from Vienna 🎡 Tschüss!!

[@TypeAshton]

Thank you so, so much. We really appreciate your kind words of support.

[@michaelstander1263]

Oha, das war mutig! Ganz herzlichen Dank für (darf ich sagen Deine?) Offenheit!

[@Machtmirdochegal]

It's amazing and brave of you to share that story especially with the nuanced process you usually apply and knowing people will judge, while it's good to have certainty it's hard to get there when it comes to health matters, especially genetic ones. Glad it turned out well for you. While I appreciate the intention and thorough process in Germany as far as genetic testing is concerned it's a very german thing to make it needlessly frustating just to be thorough and I also appreciate living close to the Netherlands since our process of starting a family will have me face a genetic test, I can deal with the likely increased risk of cancer for myself but it will affect if my egg cells are used to be implanted to a degree, we also face the effect of another well meant law since we're two future moms and we're pragmatic about carrying each other's genetic child. Germany has partially due to it's history strict laws about genetic selection but it does make a hard process even harder when it's an obviously genuine genetic concern, there is nuance between I'd love blonde hair, blue eyes and a tall child and I don't want to give this deadly disease to my children and it would be a humane thing to say this type of genetic risk doesn't need additional authorization as long as there's no cure. And while I get the arguments that you don't need genetic children to have children, it still should be a personal decision I would easily make with certain diseases, but then again I never had this overwhelming urge to have to have genetical children. It's devasting to potentially lose future children because you'd likely give them a disease that will affect their quality of life. I was at that crossroad in my twenties when we were told my dad had Parkinson's disease which turned out to be a wrong diagnosis. We're dealing with a different disease that at least won't affect the descendants genetically, one of the first things my dad wanted to know, motoneuron diseases just really suck, but at least there's a way to slow down the progress with his version since he's got the milder rare version, so we're grateful in a way we still get to be mad at certain doctors for delaying operations without a good explanation, at least it didn't cause him to lose function.

[@albrechtquincke5008]

I'd like to send you both my sympathy for your courage to address such a personal issue on this platform. And I'm so glad it turned out like this. Me and my wife weren't quite prepared when we had our unborn child tested and learned of a very bad disease our child couldn't have survived for more than one or two painful years. Suddenly we were in the situation of having to decide about life or death - without an ethics comittee. Pregnant woman above the age of 30 get this testing as a standard by universal health care. But like us they're not prepared for the difficult situation it gets them into. Once again I'm glad the health pros in my home town were so helpful for you!

[@mstrillian8981]

So sorry to hear that you had been in this horrible situation and needed to make heartbreaking decisions.. In Germany we definitely need the doctors to better counsel the couples before the screening and more so in case of a negative result. Compared to the Ethikkommission this is not being addressed properly in our health care system.

[@TypeAshton]

I am so, so sorry to hear of your child's heartbreaking diagnosis and the resulting grief and anguish that I am sure you felt as parents. We all want happy, healthy babies and it is heartbreaking when faced with such a devastating prognosis. My heart is with you and your wife. ❤️

[@Z4N7]

That must have been huge relief,i'm glad all went well for you.

[@TypeAshton]

Thank you ❤️❤️

[@awijntje14]

Thank you so much for making this video it must have been really hard to open up about something as personal as this. Having gone through IVF with my wife (endometriosis) and then the "normal" proces here in the Netherlands I understand the feelings around this subject (including screening for diseases and disabilities),. Again thank you for sharing!

[@TypeAshton]

Thank you so much. I hope you and your family are doing great today. ❤️

[@uweburger]

You are a very strong and intelligent and brave woman. I wish all the best to you and your beautiful family.

[@TypeAshton]

Thank you so, so much ♥️

[@Opa_Andre]

Wow Ashton, what a really heavy topic and it really takes a lot of courage to speak about. While you talked about the possible consequences of the possible outcome in regards of insurance I would consider this the even lesser burdens or fears. IMHO, the psychological aspect is the more frightening point, how to deal with knowledge as it relates to one's quality of life in the future. The possible personal consequences that can result from this knowledge are breathtaking and can plunge one into a serious crisis. After all, we all want to enjoy our lives to the fullest. Therefore, it takes great mental strength to really take such a step and say, I really want to know what the future holds for me. Going to that appointment is like appearing before the judge who holds the sword of Damocles over you. Even if it turned out well for you in the end and you were lucky enough to have the burden lifted off your shoulders. What a relief. Thank you again for sharing, it takes a lot of courage and strength to do this. 💗

[@TypeAshton]

Thank you. I actually kept my decision to test a secret for everyone except for Jonathan initially. On the one hand, I didn't want anyone to unnecessarily worry about me - but on the other, if I was positive, I wanted to be able to come to terms with my diagnosis on my own. With other family members suffering from this disease, I know that secrecy is also a way of protecting one's self. You don't want people to look at you differently or judge your decisions differently. I also didn't want a positive diagnosis to negatively impact my parents with guilt. It's a very tough decision overall.

[@HansWeberHimself]

😁You are doing life very well. Good for you. Nice to see that you are spreading the cheer as well.

[@nicolalederer9517]

Hi Ashton, WOW for sharing this particular nightmare! I can barely imagine the moment you went through when you got your result, heck, I had tears in my eyes when you revealed that you were spared your family‘s curse - and I am just someone watching your videos, I don‘t even know you! But I am so very happy for the three of you and your entire family (because, as for survivor’s guilt, I get that - but you must also know that EVERYone of your family who was not so lucky must be OVERJOYED with all their hearts for you!). As for the rigorous and unforgiving process involved with genetic testing, I guess, a large part of it comes from our history here with the terrible medical experiments done under the Nazi regime -that does not make it any easier for people in horrible situations who have to suffer through the process but perhaps it is more understandable. Thank you for sharing, all the best for your little Black Forest Family in my lovely hometown of Freiburg and a lot of strength, good wishes ans prayers for your larger family out there battling. Take care and keep on making your fantastic videos, entertaining, educating and touching, always honest and full of heart! Kind regards, Nicola

[@TypeAshton]

Thank you so, so much for your kind words. ❤️❤️ We feel so thankful for my result and continue to be so impressed by the care and guidance we received along the way.

[@feothyr6810]

Thank you for sharing this with us.

[@TypeAshton]

Thank you so much for watching. ❤️

[@habi0187]

I can completely understand what you and Jonathan went through. I am in a quite similar situation since my wife has some mental disease she inherited from her father (we found out only later since the parents got divorced when she was young and her father showed symptoms only afterwards) when she showed her first symptoms our son was only 8 years old and I spend hundreds of nights awake to think what will happen if he inherited this problem. If there would be a possibility to test for it I would go immediately for the test but I talked to him about it and he was not so sure if he would want to know. He is 18 now so it's totally his decision and I can only imagine how life feels with such a burden on your shoulder. If I could have prevented him from this I would have done anything possible to take t from him. Growing up with such knowledge is much more difficult than normal.

[@TypeAshton]

I am so sorry that your family finds yourself in such a similar situation. I hope your wife and your son are doing well and can find peace with whatever decision you make about testing in the future. Genetic conditions and the question or whether or not to test is a heavy decision for every member of the family.

[@mariellebrandt6754]

Thank you for being so open about your testing procedure and sharing the information from your research. It is hard for me to fathom the level of anxiety you must have felt. I do not know what I would have done if I were in your shoes. I hope you will get proper psychological help if you do get ‘survivors guilt’.

[@gruffelo6945]

This made a tear roll down my cheek. Damn! I'm happy for you. So much.

[@TypeAshton]

Thank you so, so much.

[@AKAHEIZER]

Thanks for sharing your experience with us, and I will not try to say many things other than, stay strong. I wish you only the best in your life.

[@TypeAshton]

Thank you!

[@berndegert9808]

Your video was courageous. I had no idea about these things. The only thing I can share with you, is the feeling when you receive the dignosis. I had it with a possible cancer. Thank you.

[@TypeAshton]

I am sure that a possible cancer diagnosis was equally as nerve-racking. I hope you are doing well today. ❤️❤️

[@micksr8680]

I am so happy for you and wish your family the very best. however, don't get complacent. Life will serve joy and pain to all of us. But with love and kindness we can get through a lot. God Bless You.

[@cinnamoon1455]

I'm so happy for your result and I can only imagine how much courage this must have taken. But I'm completely on your side. There are some things that are out of our hands but if you can prevent your kids from having to deal with something like this and don't do it, I'd feel like playing Russian roulette with their life. One thing I always found is that you can tell that people, who have a chronic illness or like you, deal with the high probability of having inherited a severe condition, just look at life differently. You value life and health differently and most importantly, don't take it for granted and are grateful for every good day you get.

[@TypeAshton]

Thank you so, so much. I have always had a similar outlook with all of this - if I have the tools to spare my child, I would do whatever it takes.

[@juergenurbas6395]

Ihr Lieben- Beeindruckt und sehr bewegend aber ebenso unendlich froh und dankbar sind so die ersten Eindrücke . Die mir jetzt gerade spontan einfallen. Welche Last Ihr getragen haben musstet- all die ganze Zeit. Aber auch die Euch abgefallen ist. Ihr habt wirklich viel wie ich meine - von Gottes reicher Bewahrung und Segnung erfahren. Gott sei Dank. Ganz liebe Grüße aus dem Sauerland 🌲⛰🌲

[@TypeAshton]

❤️❤️❤️❤️

[@mweh3936]

Your videos are just incredible - very good research and even as a German you learn a lot about your own contry. So thanks again.

[@TypeAshton]

Thank you so, so much. ❤️

[@petebeatminister]

I'm so happy for you that you are spared from this fate. I can imagine what you have gone through pretty well. In the 80s I had a HIV test done, and that scared the hell out of me, too. Remember, back then there was no treatment against it - if you were positive, you were a walking dead. And it took a week or so until the result came back, so that was not a nice time. But at least the AOK covered the cost for the test... :)

[@TypeAshton]

Oof I can imagine that was a very nerve-racking week. On the one hand you want to know your prognosis, but also the idea that there is nothing that could be done is so, so scary.

[@mariannebhatia7245]

Even I start crying listen to the video. Gott bless you. You a very special lady. 🍀🍀🍀🙏

[@TypeAshton]

Thank you so much - in the end we were very, very lucky.

[@kittmiller2212]

Ashton, & Jonathan I am so happy for you both. I was born with Pituitary Dwarfism, my kind is very rare, I have completely normal body, but my body stopped growing at 2 ft 8" when I was ten I met with my doctor at Tufts in Boston, and began testing for treatment, at 13 I received my first shots of Human Growth Hormone, and and at 27 I reached 4 ft 4 and 3/4th's Inches. I could not bear children, but I had three wonderful partners in my life, I chose not to get married. despite my height I played varsity sports, sailed a 30 ft sailboat by myself, and excelled in many things a short person would not be able to attain. I also had a non working right arm, except for lifting, and I became 50% deaf from the German Measles at ten years old. Nothing stopped me, my very tall family 5'9" to 6' 4" insisted I try everything so I did. I'm 75 now not quite as limber, but doing ok. I am so saddened for your family that they have such a obstacle to deal with. I am have lost my entire family, and I am so grateful for how hard they pushed me through 5000 shots and though facing life without obstacles, that I could easily overcome if I put my mind to it. Germany is so far ahead of the US in so many ways. I really enjoyed my trips there, and throughout Europe. Your story is heartbreaking, thankfully your son will live a long healthy life.

[@augustevarkalaite321]

Cudos to your husband that wanted to creat a family despite possible future difficulties. It is a very hard decision to make. As for my views I think preimplantation diagnostic is a marvelous tool to lessen the suffering of humankind. I hope in the future with genome editing we will be able to help couples who are both carriers of a genetic mutation. And here comes the need for bioethics committees to draw the line between curing and enhancing.

[@johanmolin3213]

Dear Ashton - and Jonathan, this was an absolutely OUTSTANDING video, which in my view, having been an obstetrician for 40 years, should be a compulsory part of specialist education both in obstetrics and gynaecology, as well as in midwifery! I recall having met a couple a few years ago, carrying a family history of the very same disease (I think ...) as you mention. The woman had a non-planned pregnancy, and knowing of the hovering threat, wanted genetic testing of the fetus. That is no problem for us here in Sweden. However she DIDN'T want to be tested herself. Of course she knew that if the Chorion Villus Sampling turned out to be positive, she would know that she was a carrier; if it turned out negative, she still didn't know which it was. The agony this young couple had was very easily recognizable, so no wonder about your emotional turmoil. The very best to you and your family for the years to come!

[@leenkierousseau6572]

Thank you for sharing this. It is a very emotional topic with alot of impact on you as a whole person. When we were thinking of a family, my husband was afraid of problems, but we couldn't afford al the test (very expensive in South Africa). Luckily we now have 2 very healthy teenagers in the house!

[@TypeAshton]

The cost of everything is certainly something that weighs heavy on my heart. We are very fortunate that this was not a burden for us, but it is also heartbreaking to think that there are families out there that had to skip this testing because of cost.

[@aglaiacassata8675]

Thank you Ashton, for being so open and sharing your story with us! When you talked about your actual diagnosis - I had to cry with you, I was so relieved. You two are very brave to tackle this problem with so much analysis and compassion. About genetic testing in the US: The general attitude in American society is: People have the right to do as they please, with a limited number of exceptions. (Just look a the whole face mask debate...) The German approach is different: Historically, people only had the freedoms they were granted. That's at least how I explain these huge differences: they reach back to the founding principles of the US and German state.

[@TypeAshton]

We are so grateful for the wonderful care we receive in Germany. Human compassion and solidarity is certainly something to be proud of.

[@laillabethm]

Thank you for sharing such a personal topic. Regarding the survivor's guilt I'd suggest you to read the books of Edith Eva Eger: The choice and The gift. She's a Hungarian holocaust survivor who emigrated to the US and has become a psychologist, and is still working at the age of 94 :) She also had serious issues with her own survival guilt and writes about it in The choice. (There's a very good documentary about her from a Hungarian director duo Eszter Cseke & András S. Takács in their series On the spot, but unfortunately I couldn't find English subtitles to it :( )

[@PalmyraSchwarz]

Another impressive video. Unfortunately, my English is not so good that I would have understood what it was about right away, but from about the middle I was more or less in the picture. Oh my goodness! I haven't checked yet, but wasn't one of your first videos about a medical sword of Damocles? I would probably go insane thinking about all the "what ifs?" implication and I'm glad it turned out so well for both of you. This was definitely one of the most dramatic videos I've seen lately.

[@TypeAshton]

Thank you so much. We are extremely fortunate for our outcome.

[@ingeborggroth1415]

The German Independent ethics committees are unique throughout the world. They don’t have to defend their decisions to any authorities, neither financial nor political. This is the highest possible standard of ethical safety one can get. (Also, every single new pharmaceutical substance has to pass their votes before it can be brought on the market. No economic pressure can waver the committees‘ decisions. I‘ve been working in pharmaceutical business, that’s why I know. Getting a drug through a German EC is tough - and it should be!) In France, just as an example, the national ethics committee is dependent of the government, so decisions are much more prone to political opportunism. I am so thankful for our system here, despite of the tremendous amount of red tape.

[@TypeAshton]

I was reading the credentials of those who current sit on the BW Ethics commission for pre-implantation diagnostics and was really, really impressed by their experience and diversity (from genetics physicians, to ethics professors, lawyers to disability advocate experts) - if feels like they are extremely well equipped to make the best decision given difficult circumstances. I am very happy that they leave this to the "professionals" and do not make it political.

[@inigoromon1937]

They are not the only ones in existence. Many other countries have them.

[@o.b.7217]

Germany's past has a lot to do with that independence from politics.

[@uweburger]

@@urlauburlaub2222 you are talking gibberish. How do private sport clubs connect to Genetik testen and in what way is the eu influencing them? Please stop.

[@laughtercastle]

This is a fascinating and emotional story to share, that sounds like a very intense experience. I'm also an American that did IVF in Germany. The costs alone were so much lower there, my husband and I felt very lucky we could do IVF and other testing while we lived there as it was a fraction of the cost in the USA. As an example, one test that was critical before IVF would have been $4K USD, and it was completely covered in Germany. Our experience with the clinics there were positive, it was stressful sometimes with the language barrier but overall it was good. Your experience getting your results reminded me of when we got results of a test back for our situation, we hadn't even sat in the chair before the doctor told us the results, which was some bad news, but there was also no greeting, no nonsense, just the facts. The biggest issue we faced with the bureaucracy in Germany was when we moved from Hamburg, where we did IVF, to Munich, and we wanted to transfer our embryos. Long story short, one side required a form the other side wouldn't recognize, and we ended up having to fly to Hamburg and personally drive our embryos back to Munich, in the cryo canister and everything. It was an experience. We weren't offered PGD/PGT there as part of IVF as it was still new (7yrs ago), but I'm glad we weren't told about it with the ethics panel, that would have been harder. We were not successful with multiple treatments in Germany, so our doctor in Canada recommended PGT right away, but the other version that looks at whether embryos have a full set of chromosomes instead of a specific gene. Canada also has laws governing what can be learned from this test, we can only know whether the chromosomes are all there or not, no specifics. As a cost comparison, I believe we spent roughly 12K euros total on all our fertility treatments in Germany (a full round of IVF and several rounds of IUI and FETs, we had to pay full price due to needing a donor), and our single IVF round in Canada with PGT testing was about $30K CAD, and additional testing and treatments will be another $10-15K if we don't have to keep trying. Germany's healthcare is wonderful, my husband has type 1 diabetes and we felt so much safer there than in the USA. We have since moved to Canada which also has universal insurance, not at quite the same high level as Germany, but it still helps. Wishing you and your family the best.

[@TypeAshton]

Thank you for sharing your story! We hope everything has turned out well for ou.

[@starryk79]

wow that was emotional. I actually shed a tear at the end and i am really happy for you... well on my mothers side my family is having problems with epilepsy. My great grandfather had it really bad, my mom had a milder case where she just kind spaced out but without the spasms (which still prevented her finishing her school and made her doctor recommend her to not get another child afte me) and i also had it pretty bad as a toddler and again during puberty. Luckily i have a form of it that stopped after puberty.. Still i decided that i don't want to have children because of the risk to have my child going through that as well even if its not close to being 50/50. My mom has 4 siblings and none of them or their children had epilepsy. But you can't know how bad it would be and of course it might not happen at all like with my grandmother. Of course it's not remotely as bad as your case and i don't want to even pretend it's similar. It can be treated with medicine for example. But as i have gone through this illness and knowing what my parents went through with me during my childhood this definitely is something that also had me thinking a lot.

[@TypeAshton]

Oh my heart breaks for you. Epilepsy is so scary and I can only begin to imagine the burden you must have carried growing up and how it has affected you to today. I also wrestled with the idea of having children for a long time. One of my family member's was struck with this disease when their children were still young - and the emotional toll that my cousins had of watching their parent slowly die is something that will always stick with me. It is something that weighs heavily on my heart.

[@tingenhd6603]

Thank you for sharing this. What a relief getting to know that you are negative and therefor also knowing you can't pass the genetic disorder to your offspring. One aspect no-one has mentioned yet (I think) is the right to not wanting to know. Some think ignorance is bliss, especially when there is nothing you can do about the disorder. This could be a ethical problem. Let's say it's your mother that has the genetic defect and you have a 50/50 chance to have inherited it. And you are one of the people that prefers not knowing. When having children they have a 50/50 chance of inheriting, in case you have it even though not actually knowing. Suspecting is quite different from knowing. When this child decides to take the test as an adult, and in case it is positive, it automatically means that the ignorant mother must have it. How to handle this? It's a terrible burden for the child to know and at the same time being aware that the own mother doesn't want to know. Not great.

[@charlotteanna]

I was staring at my laptop 😳 shedding some tears. very well narrated, I was able to understand the facts and the feelings. many facts about germany I didn't even know, this ethic comission is very well needed, regarding germany's ugly history. I am happy you were negative and I raise my hat to the blackforest family. I don't know how I would have dealt with all those problems. all the best for ashley and jonathan! 🤩

[@TypeAshton]

Thank you so, so much. We are incredibly lucky for my diagnosis and are grateful for the care and guidance we received along the way.

[@LaureninGermany]

Finally plucked up courage to watch the rest. I honestly wonder if they should have put you through so much preparation for the worst. You had to deal with a lot. If it had been the worst, then you‘d have dealt with that, anyway, but I also think the dr asking you again when she knew was a very odd thing to do. Btw, I now have a stress headache from trying not to cry (and failing!) I am so happy for you. And as for survivors‘ guilt: don’t you think that you would be so pleased if someone you knew had been spared a health condition you have not (like your sinuses, for example)? Remember that if you feel guilty. You‘ve been through enough ❤️

[@apveening]

"but I also think the dr asking you again when she knew was a very odd thing to do. " It was the correct thing to do. If it ever became known a doctor would tell a good result/negative diagnosis without asking, the question itself would already be telling. And the same would go for telling after a negative answer.

[@petrameyer1121]

Ty you for sharing.

[@TypeAshton]

Thank you so much.

[@stephanteuscher6583]

As sad as this video started as happy I am now for you. It really cost me some tears. In case you didn't celbrate yet - I do now for you. Cheers!

[@TypeAshton]

Thank you so, so much. We are incredibly fortunate with my result.

[@Osti67]

Congratulations on your result. What ever happens in the future, now you can also look back at this time and know that you and your partner went through this together and take this to strengthen your partnership and know in hard times, there is someone you can rely on... all the best to you two and hope you guys can fulfill your dream and become a family soon :)

[@TypeAshton]

Thank you!

[@jamesdenton3725]

Hi Ashton, it takes great courage to share such a personal and highly emotional bit of your life. When the question on whether to have kids or not came up with my wife, it took me a rather long time to decide. Not because of not wanting kids, but rather out of some unspecific fear and respect for what entails having kids. Having children is kind of a one way ticket. Unlike with Amazon you just can't return a child for a refund. So one should really get their act together and think twice or more before having children. For me the main questions simply were "Am I able to be a (good) parent? Am I able to care? Am I able to teach? Am I able to protect?" It took quite a while to realize that yes, I am probably able to do that for at least the next 2 decades. And you know what? It's been the damn best decision I ever took. it totally changed my life for he better and massively shifted my priorities. There's only one thing I'd do differently in another life - Get children far earlier in life.

[@johnmcorigin2389]

Wow. What a strong video. I am very touched by your story. Thank you for sharing it! We tought a lot about prenatal diagnostics and quite quickly considered the consequences. What would we do, depending on the possible results? Well, after seeing the first heartbeat, it was immediately clear, to both of us, that there could not be any consequences following prenatal diagnistics. Thus we never got it done. What's the point of a test if the result does not matter? That's of course our decision making process. Other people may have different conditions and make different decisions.

[@flamedealership]

You know, I'm struggeling with finding the right words. I haven't read all the comments on your video but I'm sure someone mentionend at one point why genetics is a very, very touchy subject here in Germany given our history. And I won't attempt to assure you I could understand the amount of pschological horror you had to endure during that process because a) I don't have any preexisting condition like that and b) never wanted to have children of my own. Then why am I writing a comment at all? Well, because of the fact that due to some different health problems of mine my experiences with the people working in our health care system range from superb to unacceptable in regards to sympathizing with a patients psyche. I am so happy for you that you obviously got into the hands of very skilled people who could fully understand the kind of stress you were in and acted accordingly. And to be honest it does restore my faith in our health care system although it clearly isn't flawless. Watching some of your latest videos was kind of a spoiler to this one though in regards to what the outcome would be😏. But anyway, you are still a young woman. Seeing you come up with the strength to share a critical personal issue the way you did and exposing yourself to the danger of irrelevant comments "earned" you the respect of this 56y old man - not that you needed it in the first place.👍

[@ElinT13]

What a difficult topic - thanks for sharing this! It must have been very difficult for you to talk about it. I can only imagine what it must have been like for you. As to myself: I am only battling pains due to exreme sports in younger years. Yeah, it's hard some days to exercise "through the pain", and some days it is depressing, but that doesn't scare me for the future. I am not afraid of death, but I have respect for the process of dieing, which could be a difficult or painful experience. Yet that is nothing compared to what you had to consider. I am very happy for you that you won't have to worry about this hereditary desease now, life is difficult and fragile enough without it. May you all always be blessed with health. As to your survivor's guilt: Maybe there is a reason why you are not affected, maybe it is your task in life to help people in this situation. Don't get me wrong, I do not want to oblige you to do anything, but sometimes turning guilt or grief into something positive is a good way to deal with a situation. And maybe this is an idea for you that you could combine with your field of study. Greetings from Stuttgart!

[@TypeAshton]

Thank you so much. I do hope you are able to continue managing the pain and hopefully find relief soon. ❤️❤️

[@fex2911]

Wow! Very intense! Congratulations to your results, happy for you! I've read some of the comments here, and I think most people understand why the ethical question plays such a big role here in Germany. The fact that you had to pay for the procedure even though the outcome was almost sure .. well I guess that's part of German bureaucracy...

[@TypeAshton]

Yes Germany's history certainly plays a role. I actually really admire the committee for their incredible experience and tenure (they have genetics physicians, ethics professors, lawyers, patient advocates and an advocate for those with disabilities, who all sit on the panel). This is such a complex decision and they clearly handle it with care.

[@AnamarijaMaric]

Amazing story, and it just showed how strong you are for wanting to know and protect you children. Im just curious, if you were tested negative, and your children didn't have a risk of inheriting the gene, did you still went with ivf?