The Reality of Being a Trisomy Parent (TRISOMY 13 / PATAU SYNDROME)

[@SamuelT13]

I made this video in order to help prepare new/prospective trisomy parents when faced with a trisomy pregnancy. I really hope it helps someone out there struggling with the incredibly daunting prospect of having a trisomy child. I, myself, was completely unprepared, and hope to help others avoid the same situation I found myself in. Please reach out to me if you have questions or need help. I'm always available. FYI- my son is almost 7 years old, and my daughter is almost 5. We're a very happy family, but our life looks quite different from that of most families with healthy children.

[@DonnaAbrams-qh7zt]

I think your family is uncommon in that you both work from home and obviously have the resources to care for your son. Most parents would not be so lucky and with today’s technology would know long before the birth that their child would be profoundly disabled. To have that knowledge and still bring that child into the world I believe is wrong for all involved. Everyone must make that decision for themselves but they should realize that their life with a disabled child is likely to be much harder than yours.

[@SamuelT13]

@@DonnaAbrams-qh7zt yes I completely agree. I think we are in a unique position where it isn't anywhere near as difficult as it could be to raise our son. That's exactly why I make these videos, to show people what it's actually like.. so they can decide for themselves if they'd be able to do it or not.. if its fits with their lifestyle/financial or other means/etc.. and then make whatever decisions they can to ensure the best outcome for everyone involved

[@scarlettgallegos5812]

@@SamuelT13 And I’m sure you did / doing the right thing for your family. Admirable you have taken a few minutes to get out some good info for anyone facing this situation. Again, wasn’t referring specifically to you & your son. Good luck 🍀

[@shopshop6746]

Beautiful child, I wish a happy life for you and your family..

[@pawebronowicz4453]

Teaching love by example - Man, thank you for this video.

[@SusanStAmour]

Lyly is growing so fast. You can see how much he loves his sister too. Thanks for the update for us Grammys out here, you're doing a wonderful job Samuel.

[@marypack7313]

You, your wife, daughter and son are family. I think you are wonderful people.

[@jesusmysavior4719]

You are wonderful parents,may God be with you and your beautiful children and give you power, blessings and love🙏

[@Michelle-gw4db]

Lil man is getting so big. I haven't seen him in a few. He so adorable ❤

[@SamuelT13]

he certainly is! :) new vid coming today. Lots of old pics n vids from his birth.. and some recent ones.

[@gilbertaestes945]

Bless you and just know we are never alone! ...the great god of comfort and compassion is with you everyday, every decision you endure. So nice to know about children with this new kind of disease we don’t hear about in the USA.

[@haileennevsmom09]

Awwww

[@jenniferstone2975]

Thank you for the update! As I’ve mentioned on another of your videos, I am a labor and delivery nurse. Your videos have been educational for both my professional understanding of this medically complex condition, they also have provided a window into the personal realities affecting the parenting and family of a Trisomy 13 child. I have learned so much from you. Your videos are lovingly presented, the reality, challenges and joys are honestly shown. Knowledge is power - I am a wiser, more empathetic nurse and human from the education your videos have provided. Sending love and gratitude to you and your family all the way from Laguna Beach, CA USA.

[@SamuelT13]

Thank you so much. I'm very happy to hear that my videos have been informative for you - especially since you're in the medical field yourself. That's truly wonderful to know that I've had that kind of an impact. And of course i very much appreciate your well wishes. Our family is doing very well thank you :)

[@albrightfs]

Thank you for sharing.. I'd never heard of this..GOD bless your family and all you do. Both of your children are beautiful..

[@GeorginasJourney]

Your family seems wonderful, proud of you for how you’ve leaned on each other through the good times and the bad times

[@haileennevsmom09]

He's a sweetie

[@SamuelT13]

he certainly is :)

[@manuelanusche6917]

Great family🥰

[@dianehaines1220]

Glad to see your new video. May God pour his richest blessings on you and your family.

[@lori-ff1cg]

I have seen your son in other videos & pictures, he’s a very cute & sweet boy & your daughter is as well. I really like seeing all the love in your family, both parents are wonderful with their son & daughter, and not hovering over their son but being there for him when he needs something. All parents need to see this. So much love to all of you

[@jillpavel5975]

Thank you for sharing your beautiful love story. I think Lyly is the luckiest little boy in the world and you are so blessed to be his parents and Lily his beautiful sister. He is life. The words incompatible make my heart hurt because he is so beautiful. Again thank you for sharing your life with us.

[@Laurie-g5b]

Beautiful family, your love and devotion to each other is truly wonderful to see. 😊❤

[@marielagent4387]

He’s gotten so big and he’s a handsome little boy. ❤✨❤️✨❤️

[@irenegilmour2452]

So much love and total adoration .you have such a special family god bless you all ❤❤❤❤

[@marlieshagg6144]

Lovely to see Elijah again! 💙

[@ComedyPlastic]

He's such a cutie 🥰

[@TickleMonster333]

Look how far you have come!

[@MeiDei6289]

I really like your channel. You are an excellent at explaining the reality of being a full time carer for a child with trisomy 13. The amount of relentless selflessness that you and your wife have is truly inspiring. I was wondering if they have resources for respite were you live? You and your family deserve to be able to relax sometimes. It okay to have some time for yourselves. Insurance providers typically offer this service, along with an aid to help around the house. Thank you for sharing your story. I just adore your videos!

[@SamuelT13]

thank you thats very kind of you :) we do have access to some kind of assistance yes, but that doesnt include respite unfortunately. It would be nice to occasionally put him in a care facility for a night but... that's not something that is offered to us anymore (it used to be when he was a baby, though we never used it). Honestly I think we're OK. My wife and I support each other extremely well, and have a nice little routine where we make sure the other one is always well rested, feeling ok, etc. We're in a very unique position in terms of our work n living conditions so I think things are fairly easy for us compared to many others with trisomy children very much appreciate your concern though. You're very thoughtful and compassionate

[@MeiDei6289]

You are a great family. Thanks for replying. God Bless you and yours

[@Gonkygong]

Thanks for this video. I do feel and hear the exhaustion in your voice though, not defeat, but unwilling acceptance maybe? I have a loved one with a severe life limiting condition (partial trisomy 6p) and it's a real blessing to have them here, to live and thrive in their own way, but yeah, the normality of day to day things, I do miss them. Normal for the majority isn't normal for us trisomy carers (or in my case, loved one, as I provide little care). I hope you are looking after yourself too though. A child is only as happy as their parents contentment.

[@junegrimley5697]

My friend had a baby with edwards syndrome, they told her it wouldn't survive the birth, she made it home, they then had christened and I was very lucky to be one of her godparents, she lived for 14 months, she was my friends 12th baby, so she had a lot of constant love and attention, little Ellie was beautiful and just perfect to all of us, your beautiful boy is gorgeous xxx❤

[@phoenixdavida8987]

12 children is.... a choice.

[@tessmoore3762]

I have a very good friend who has a daughter that is a Trisomy 13 child. The doctors said "abort" over and over, and she refused. Her husband finally had to tell them to stop saying it. They said the baby would die within seconds of being born. When she didn't they said, minutes, then hours, then days. She is a teenager now and one of the longest living Trisomy children. Her mother is amazing. She has done a lot of research and helped her daughter far out live what doctors have predicted.

[@scarlettgallegos5812]

That Dr who advised termination gave the best advice ever! However if one decides to go through it, I can’t even imagine actually bringing him home, better to have kid adopted or placed in a facility soon after birth. I’d never even consider taking on this situation voluntarily, especially for Free. If that’s something one wants to devote their entire life to, then take a well paid position in a good facility caring for those that need this type of round the clock. They are always needing good support people. I’d much rather spend my life in other ways. Perhaps this should be viewed for any one considering going through with such a devastating diagnosis. While there’s still time to abort. I’m positive I’d never bring forth such a child.

[@SamuelT13]

Which doctor advised termination? Not sure what/who you're referring to here. We never knew our son had Trisomy 13 until he was born so nobody recommended termination. And we also never had the choice to "bring forth such a child". It was just dropped in our lap and we did our best in a difficult situation.

[@scarlettgallegos5812]

@@SamuelT13 And to each his own. When it comes to things as personal as this, I suppose it comes down to what we can live with. A very difficult decision for some, however not for me.

[@scarlettgallegos5812]

@@SamuelT13 I wasn’t referring to you

[@scarlettgallegos5812]

kzbin.info/www/bejne/ipW1eoOlptmpg7M&lc=UgwlyZ6AuH60j2ZdOC14AaABAg&si=M-kLe1RseQxH45ak

[@SamuelT13]

@@scarlettgallegos5812 who are you referring to then? this is my channel

[@franny5295]

Do you think a single mom with other kids could manage a kid this complex? Edited to add: If this child lives another ten years, he won't be small. Could a single mom manage a man sized child dealing with this? Edited one more time to add: If a single mom happened to have a trisomy 13 child survive into adulthood and she died first, who would take care of him?

[@SamuelT13]

honestly that's the absolute nightmare scenario in my opinion. However, a single parent taking care of a trisomy child would likely opt to utilise every single possible avenue of assistance available to them - things like visiting doctors, nurses and other assistants, stays in hospital/facility when required to give the parent a break, assistants/nurses to accompany the parent when visiting hospital/rehab/etc, and so on. Of course it depends on the country/state the parent is located, but in my personal situation (we live in Japan), we have access to all of these types of services... we just dont use the majority because there are 2 parents who can handle it all together. We do have another child, which makes things much harder than when we just had our trisomy child alone.. but we can still manage. If the parent dies when the trisomy child still lives, the child will go to a facility designed to care for such children. It is a fate that does befall some (some parents just give up the child because it becomes too difficult) One thing to keep in mind with trisomy children is that they are often extremely small, even when aged 10+. A key reason for this is that they often have heart defects, which leads to a extremely calorie restricted diet.. and so their weight is kept as low as possible. This is the case with my son. So.. he is about 7 years old, but only weighs about as much as a 3 year old. Hope that info helps

[@johnanddenisemarsh7708]

May our loving Heavenly Father bless you to have eyes to see His tender love and care for us, His children like your tender love for your children.

[@teijaflink2226]

A single mum probably unfortunately would be forced to put the child in a care home, at least part time.

[@SamuelT13]

totally understandable to put the child in a home, particularly if the parent is serious about their career and cannot work solely from home.

[@RebecksMaguire-pb1ni]

I don't mean to laugh but I have a 3 month old daughter with trisomy 13... And I totally get it sometimes I will stand there and go through four diapers without even walking away from the changing table. But I love her so much lol

[@SamuelT13]

lol yeh that happens. I've changed and hand washed 3 loads of bedding (incl diapers ofc) in the space of about 40 minutes before. Absolute nightmare

[@jamiemccullough1970]

Someone needs to design better products for children/small-bodied adults who need incontinence items. It would be better for everyone involved.

[@SamuelT13]

totally agree

[@mariajesusmorales6121]

💌

[@lisaowens7304]

Have you considered the effects on your daighter? Please consider counseling or other services. Im a HCP and i find we underestimate the psychological effects on siblings of special children

[@SamuelT13]

hi there. Thanks for your comment. re: your question -- honestly, i can't imagine being a parent and not constantly thinking about the effect that every single thing has on any child I have. Just goes with the territory.. at least for me. So yes, I have thought about it. So far, I see no worrying signs that my daughter is being negatively affected by our son .. other than perhaps in terms of missing out on having both mum & dad around during certain activities (bcs its often easier for one of us to stay home while the other goes out.. as i talked about in this vid). But otherwise we're both extremely attentive parents who both work from home and so get to spend a LOT of time with both kids. I'm curious - what kind of psychological effects did you have in mind?

[@lisaowens7304]

@SamuelT13 We see children who become withdrawn. They don't want to have friends over because their home situation feels different. Some children act out at school; this is a common presentation. The children aren't necessarily doing it on purpose; it is subconscious. I know you spend a lot of time with her. I'm just asking you to consider your family isn't like most and that becomes more apparent when they attend school or mingle with other children. A positive is Lily will likely be very sympathetic and accepting when she meets other special people

[@lisaowens7304]

@SamuelT13 I totally appreciate you giving a true picture of what life is like for your family. Parents don't recognize how difficult life can be once their children aren't babies but require total care.

[@SamuelT13]

@@lisaowens7304 thanks for your reply. One thing to understand about our particular situation is that we live in Japan (with myself being a white Australian, wife being Japanese, and daughter being mixed). And because Japan is mostly a homogeneous (japanese only) society, my daughter would ALREADY feel different and perhaps hesitant to bring friends home. So actually I think the addition of my son to that situation really just strengthens an existing circumstance. So yes I think its mostly guaranteed at this point that she'll feel different. However, because its such a guarantee, it's something I've never NOT thought about since the day she was born.. and something i'm therefore constantly doing groundwork to help ensure she deals with it as healthily as possible. I want her to understand that YES, she is different. and YES that is also okay, normal, etc.. and of course, that she can always come to her mum n dad to talk about her concerns. We're not the kind of parents that put up walls or enact strict disciplinary measures.. we are very open, supportive and try to breed a culture of equality in our family. Shes not so much "our daughter" as she is part of our family. So hopefully she'll always feel comfortable expressing herself to us and wont fear punishment / whatever as many kids do (cos i've no plans to punish her in that way). anyway - appreciate your concern. Hope my response comes across as intended and helps illuminate the situation a little :)

[@tessmoore3762]

I grew up with a little sister with Down syndrome. I was not negatively impacted at all. In fact she was a huge blessing to all of us. She taught us compassion and patience. The family I know with a Trisomy 13 daughter have 2 boys that are very mature, well adjusted boys. They have not been negatively impacted as well.

[@mytiliss682]

How is your daughter well-being affected by her brother? He leeches family resources and attention and in the end she will have to accept inevitable, that seems grim.

[@SamuelT13]

hard to say honestly. I think she'll be OK, because she'll have extremely supportive and sensitive parents to guide her through her grief. yes he does use a lot of family resources (our time & attention mostly).. but then again, so does she! we're a family so.. i dont see it as "leeching".. we're all just utilising the resources that are made available to them. We're a very tight family. I think we'll all be OK.

[@mytiliss682]

​@@SamuelT13you may think otherwise, but being abandoned in favor of someone else, that's a feeling almost every elder child face when newborn appears. But Samuel mimics it by being helpless constantly. Later felling of least favourite may add up, so her reaction may vary. Personally I haven't mourn my grandfather at 13. Idk, if I always was coldhearted or bond wasn't strong enough. He wasn't able to move around, smoked a lot and after this I got his room. Everyone said that he got enough struggle (11 years in bed is no joke) and died peacefully in a sleep.

[@SamuelT13]

@@mytiliss682 i cant imagine why my daughter would ever feel abandoned... we give her about 10x more attention than we give our son, simply due to the fact that he doesn't require as much attention and she (literally) demands it.

[@andreipalmer8470]

That's a harsh way to put it, he never asked to be born with such a disease😡

[@andreipalmer8470]

​@@SamuelT13I thought what that person said about your son leaching resources was uncalled for, sorry for what he said.

[@pippathomas5019]

Here in America, a lot of states have abolished or severely limited abortion rights. Here's my concern: Eventually someone is going to figure out the cost between medical care and termination for these blessed ones. My fear is that, again, women will lose the right to choose and be forced into termination. That would be a huge mistake. 💖💖💖

[@SamuelT13]

the US is a deeply troubled nation in some ways.. sad to see those kind of limits on what I view as fundamental human rights

[@fabianifigueira]

GOD save us from this someone. The Germany guy Who tried this not so much time ago, traumatized people enough for them not triyng this again for some time. One of his things was study this cases so they could be avoided, but sadly, not voluntary, nor ethical or human way in "taking all this information" and leave the words at that. All I see is a beautiful and smilling litlle boy, He is living the Best Live He can on his own way, and that is all that matter.