Trisomy 18 | Finding Out Your Baby Has Edwards' Syndrome Part One

[@cjjjones8123]

What a brave lady, a real inspiration.

[@DrTracyPapa]

You know what?! She's expecting another baby. She is a pretty amazing lady. :-) Thanks for watching and commenting.

[@jmk1962]

I lost 4 babies to Edwards. Two miscarriages at 12 & 8 weeks, no cause found, and I was told it was nothing genetic, I was just unlucky. Then I had a fullterm stillborn daughter (3 days past her due date) who weighed just under 8lbs. They did a post mortem on her and could find nothing wrong with her so they put it down to 'cot death' but in the womb. A year later I had my son by elective caesarean at 37 weeks as he was breech and they didn't want to let him go full term because of what happened to his sister. From birth my instincts were telling me there was something wrong with him but no one would listen to me. He was checked out by 6 different paediatricians in the 5 days we were in hospital after his birth and none of them found anything wrong with him. No one listened to me, assuming I was just an over anxious mother because I had lost his sister the year before. We took him home and my health visitor dismissed my concerns when I was worried he wasn't reaching his milestones saying he was a few weeks early, he's a bit behind, he'll catch up, stop worrying, just enjoy him. In the end I had to keep my concerns to myself as I was afraid they would think I had post natal depression and they would take him away from me. Long story short, when he was 5.5 months old he had a cold and was very congested and I noticed his breathing was quite laboured. My instincts once again told me he wasn't looking right so I decided to take him to the baby clinic to get him checked out. I put him in the car and as we were at traffic lights I glanced down to see he had turned purple so I pulled over into the car park of a solicitors, grabbed him and ran into reception shouting at the receptionist to call an ambulance. This was 21 years ago and I didn't have a mobile phone. He ended up in our local hospital where they worked in him for 5 hours before transferring him to St. Thomas Hospital in London. They also worked in him for another 5 hours before coming to us to say there was nothing else they could do. They said they would phone GOSH, Great Ormond Street Hospital, to see if they had a bed and they did so he was transferred over there and withing 45 minutes they had him intubated and put into and induced coma so his body could recover. He was in PICU for 10 days before being transferred to a respiratory ward where we were trying to get our heads round that he might need a tracheotomy to prevent this happening again. Then the genetic team paid a visit and asked to take bloods as they obviously saw some signs that caused them some concerns. A week later we were called into a room where the consultant told us our son had a rare form of Edwards Syndrome/Trisomy 18. That they only knew of 6 other children in the world who had this particular form of Trisomy 18. Of the 6 children, 5 died between 6-8 months, only one lived until 13 months. They said our son would have no quality of life, he would never walk or talk and that his condition was incompatible with life, to take him home and expect him to die at any time. They were literally that blunt. We were transferred back to our local hospital for a week where we were taught to do CPR and resus and then we took him home. Well our son lived happily for another 10 months. He was never in any pain, never cried, was not on any meds. He pulled out his nasogastric tube and preferred being fed by his Habermann bottle. He progressed onto solids with his favourite being carrots and avocados. He went to special needs swimming and was at his happiest in the warm water were he used to sing to himself. He charmed everyone he met. He had a happy life surrounded by love and was the most delightful little boy ever. But sadly the doctors were right and eventually one night he had an epileptic type fit and 3 weeks later his heart stopped during the night while he was asleep. Even though we had agreed to no resus, when it happens your instincts kick in so my husband did mouth to mouth and CPR while I phoned for an ambulance. Our local hospital whisked him away while we were in the parents room phoning our families to tell them he was gone. Then they came and told us he was intubated and we could go and see him. They hadn't had his notes there in A&E and didn't realise we didn't want machines breathing for him so they took him off the machines and put us in a private room. My mum flew over from Ireland the next day and we all got to say our goodbyes as we wanted to let him go when he was ready. I did not want him being kept alive on machines. Our little soldier lived for another 16 hours and he died in my arms when he was ready to go to sleep. I felt his heart stop beneath my fingers and I knew he has gone to be an angel. He was an absolute joy and I treasured every day of his short but wonderful life. I just wish I had had more time with his sister but I only had half a day with her, but at least I got 15 wonderful months with my son and have many happy memories of our time together. We had had genetic testing done after our son was born and found out my husband was a carrier of this condition even though he wasn't affected by it himself. We had lost 4 babies over a 10 year period and none of the doctors had ever suggested genetic testing. A simple blood test would have showed he was a carrier and we could have been spared 10 years of heartache. I now say to any couple who are experiencing multiple miscarriages to insist on genetic testing. Healthy babies just don't die for no reason. Having said that I do not regret having had our son, but couples should get more support from doctors and more answers when they keep losing babies. I hope my story helps others to speak out and push for genetic testing to get answers.

[@katebanks4122]

Thank you for sharing ❤️

[@DrTracyPapa]

Thank you so much for sharing your story with me and us here on the channel. You are strong and brave. Please let me know if there is ever anything that I can do for you. Feel free to reach out to me via email or over on Instagram in my direct messages. All the best to you. Hugs! ❤️❤️❤️

[@DrTracyPapa]

❤️❤️❤️

[@dylan251]

Might as well Write a book

[@eatymceatison97]

So heartbreaking that those doctors told you it was just a case of bad luck when you knew better. They say things with so much conviction when in reality, they know just as little as you do sometimes.

[@seleghascrew]

I have a baby with Trisomy 18. She is 5 months old now and extremely beautiful

[@doaahafez5430]

I have a baby he has trisomy 18 too now he 10 months he was in hospital from his born then the doctor did for him two operations for feeding and preath now he at home but he still 3 kilo and I don’t know what can I do for him more medicine he took thanks for your video

[@DrTracyPapa]

Babies with Trisomy 18 can have trouble with feeding and gaining weight. If he has a feeding tube, you can ask your baby's doctor about different formulas to help him gain weight.

[@carlatillman2891]

Congratulations on your new baby!

[@umbreenwajahat]

Kisa hay ab aapka baby

[@kgotosofetseramatlo4075]

I have a beautiful baby girl she's 6 months now . Makes my day with her moods acting attention. After you give her what she wants will look at you make sounds moving her hands . Scares me because she removes her oxygen

[@judyhoffman1359]

I applaud you! So positive, and I will continue to pray blessings on your family. Thanks for sharing.

[@DrTracyPapa]

Thank you! You too!

[@alviealexander1698]

🇲🇾Me : face this situation (edward syndrome) to My little brother still in My Mommy tummy on Covid19 😔 N i cant see My first little brother😔

[@DrTracyPapa]

Good luck to you. Sending you encouragement.

[@bethkeady7025]

incredibly strong woman

[@DrTracyPapa]

I totally agree. ❤️❤️❤️

[@o_o-lj1ym]

I’m learning about this at school

[@darlenesawyer6739]

My daughter's Dr suspects that she may have this. How do I help her? Her listen to this may help.

[@johnholliday5874]

Kind of an odd setting for this important testimony. Looks like an abandoned factory and sounds like babies screaming in the background. Then the music wells up. This doesn't need background music to make it emotional. It already is.

[@abelinagomez-kc8bg]

Hi my name is abelina Gomez, I was pregnant with my second child and I was told that my daughter Evelyn was going to be born with trisomy 18 and it wasn't too late for abortion and they were trying to push me towards the destination of abortion and I was not going for That because in my head at least i could hold and kiss her tell her that mommy apologize for this but ill be with u soon i just wanted to see and hold her feel her no matter how long she will be here but i wanted to have her in my arms and hand her to the lord for care... 😢😢

[@abelinagomez-kc8bg]

In wen the day came for me to meet my Lil angel 😇 she ended up to be the most beautiful gorgeous Lil baby girl n nothing was wrong with her she was perfect and thank God that she came out to be a nagitive result for trisomy 18😊thank u God 😢

[@hixxyted1244]

Sending you nothing but best wishes how is she glad she's well ❤

[@snapperblue51]

Is it just me, or giving her this genetic information really badly botched? At work? On the phone?

[@DrTracyPapa]

Thank you for sharing and I agree. We do not normally deliver results in this way in our offices. I have an entire video about this exact topic planned for March. ❤️

[@JaimeMesChiens]

I hope that this is okay to ask, especially since you’re in Texas, but would you think it wrong to terminate a full, not mosaic, T18 pregnancy? What if there are other children already and the parents do not want their little children to go through the death of a baby sibling? I was that little child whose mother had a baby with a lethal trisomy and the baby lived only a week. It was so difficult and so traumatic. If I was carrying a T18 or T13 and had no other children, maybe I could consider, but I couldn’t subject my children to what I was exposed. I hope for those considering carrying to term, who have children already, will be very, very, very mindful and considerate of their children and how they will cope. At 13-15 weeks pregnant, did anyone discuss termination with this couple? She seems so mindful and loving that I suspect she prepared her children best as she could, but it’s very hard for children to experience baby sibling death.

[@mcgheebentle1958]

Since a pregnancy termination results in the end of this human life anyways, the loss of this child will be inevitable.

[@kgotosofetseramatlo4075]

Any group channel I can join

[@deliamarconi4763]

Hi, I’m looking for a group too, I’ve a friend, a mother of a sweet girl with ES, T18, she’s 13 now. Seems she’s the only one here in Italy. Pls inform me if you find a group, she speak spanish and italian, her son speak english tho, can interact on her behalf. Thank you

[@deborahevans1052]

The music is too loud. But iam very sorry for all your trouble.

[@josephinebos8325]

Sorry, but the music is very depressing. I had to stop watching/listening.