T18 baby - what did you do?

[DontCareBear]

Hi all,

I just had my amnio this morning after getting 2 high risk results for Edwards Syndrome (first NHS screen and then from the private Harmony test). I was devastated when I got the more reliable Harmony test but that was 3 weeks ago now so I have adjusted to the situation. On the scan the baby looked fine for the most part - small for gestational age, soem cysts on the brain and rockerbottom feet. Pretty sure the results will come back as positive for T18.

I am leaning more towards continuing with the pregnancy as I think if the baby is most likely going to die before or soon after birth, I dont want to be the one to stop her heart before then. It is also an IVF and first pregnancy, so I dont know if I will ever get to experience this again. I can also feel her moving and I just dont like the idea of ending her life prematurely (although totally no issues with other parents who have decided to do so - everyone is different and needs to do what feels right for them!).

My worry is that if she does survive birth, is it cruel to have her suffer as she gets ill or struggles to breathe on her own? I dont have the results of the amnio yet, so dont know if she has full, partial or mosaic trisomy. I just wanted to know if anybody else in this situation decided to continue with the pregnancy and if your baby survived birth, what their quality of life was like and how long they survived for? Were they in pain? Was it a struggle to look after them, I have never been exposed to caring for a disabled person let alone a disabled baby/child.

There is just so much to consider in making this decision.

Thanks for anybody that has any advice or personal stories they are willing to share x

Sending you and your baby lots of love. IVF is so hard, and then this must be even harder.
I don't have direct experience but my friends' daughter had a very severe form of T18 and she passed away shortly after her birth, but my friends said it was peaceful and beautiful. They were very glad they'd chosen to continue after getting the test results and they had time with her before she passed.
You are doing an amazing job.

There was a little girl at my DS2's preschool who had Edwards syndrome. I lost touch with her and her mum when she and my ds went to different primary schools but I know she was still alive aged 11. She would be 13 now.

I know it's very different between knowing somebody who has a condition and caring for them 24/7. From what I knew she was a happy and smiley child. She seemed happy to watch the world go by and she was very vocal. My ds really liked coming over to her and chatting. She was lovely but I would imagine needed a lot of care.

Thanks @Petitprince and @elliejjtiny - I have decided to continue with my pregnancy as I love my little girl already and couldnt bear to stop her heart and end her life for her. She is always kicking and is so lively on the scans. She is enjoying life atm and I want this to continue for as long as it is meant to. Plus she is a little fighter and although she has T18 all her organs look pretty good apart from the cysts on her brain. This gives me comfort, as I am hoping she wont be in pain if she does survive long enough to be born. It is so tough but she makes me so happy - I am just going to treasure every single moment I have left with her. I will deal with the pain and sorrow when it comes x

You sound amazing OP. I hope I would make the same decision in your situation. All the best for the rest of your pregnancy and time with your precious daughter.

Enjoy your pregnancy Bear, your precious girl is very lucky to have you as her mummy

There was a poster on here who made the same decision you did. She had a little girl called Rumer who lives for three months. I can’t remember her name but she had a blog called Rumer’s Rainbow which you might find helpful.

Peace to you and your baby.

There was a little boy at my DD's special needs nursery with Edwards but it was the milder mosaic form, he was quite disabled (compared to the Downs kids for instance) but a very happy child. He was still healthy at 5

Wow, what a lovely mamma she has 💕 OP you're amazing and I'm sure whatever happens your little baby girl loves you. You sound incredibly warm and loving and STRONG!

I think in your position I would continue the pregnancy too OP ❤️

I did have a termination at 17 weeks for the same trisomy, also a little girl. My situation was different as I had two healthy young children at home and I knew I didn’t want to give birth to this child and potentially sour my memories of labour. I ended up having a surgical termination in London with BPAS.

If it had been my first and I wanted to experience pregnancy and birth as I didn’t know if I’d have the opportunity again I would do the same as you. It really is a beautiful experience and I can understand you wanting to spend this time with your daughter, I too was desperate to continue the pregnancy and in my case, due to age, it was my last.

Thank you for sharing your story, you sound so strong!
We found out we were expecting a daughter with Trisomy 18 at our 20 week scan, 4 years ago. It was my first pregnancy and after the initial heart break we found comfort and a sense of regaining control by continuing the pregnancy.

This child had been much wanted and was already much loved. Those feelings weren’t going to change suddenly.

Ultimately, our sadness came from knowing that we would lose her but I felt great relief that it wasn’t going to be me deciding when that was going to be.

I took comfort in the thought that the central role of being a parent is unconditional love and acceptance of the child you are given. And that was not taken away from us, we could still be those parents.
You asked about the medical implications after birth: obviously it’s impossible to predict the individual outcome and preparing for all those different scenarios is difficult.

Our daughter survived the birth and needed no immediate medical care.

In fact it was a beautiful and peaceful birth. Chances were high she wasn’t going to make it so I decided against any monitoring- I wanted to just focus on the birth.
We had talked in detail to the head of the neonatal unit who had understood and supported our wishes for our daughters short life.
She was entitled to some help e.g. some oxygen in the first minutes to get her started (not necessary) and palliative care if needed. But no interventions or harmful procedures. No surgery, no intensive care. I’m also a doctor, so I felt somewhat prepared for fast and difficult decisions.
We had a 1 minute plan (hold and love) a 1 hour plan (get christened) and so on.

She stayed for almost 3 weeks and was the most peaceful little being. She was much loved by family and friends and touched all our lives deeply.
She passed away at home.
We were very lucky to have health professionals who gave us excellent care and guidance as well as supportive family and some amazing souls we met along the way.
Most importantly as a couple DH and me felt very similar about our daughter and found a way to communicate those feelings.
We have since had another child and are expecting our third this winter.
There have been difficult times too- grief felt lonely at times, but no regrets.
All the best to you!

Thank you everyone for your stories and kind words. Also @Chrysanthemen thank you for your post. My hudband and I now have the difficult decision of deciding what postnatal care we want to give our daughter after the birth. We have since found out she has a hole in her heart and thicker heart muscles. I dont know if we should go through with pushing for heart surgery (against recommendations of medical profession due to low prognosis) or just let things happen as nature intends. I am more of the opinion that we should ley things be but I also dont want to be selfish and not give her every chance to live that bit longer by having surgery (although I know there are no guarantees). Then there is the grieving and mourning process - would it be easier on my husband and I not to have her for longer than nature intends so as not to fall deeper in love with her? Again, that feels selfish to me and I dont know if the pain would be the same regardless of whether we get to see her alive for 1 hour, 1 month or 1 year. It is such a difficult dilemma to have.

But on a positive note, I feel she is thriving in my belly atm. She is kicking away and I have an actual bump now. I have her 12 week scan picture framed in our room but it also makes me sad as she looks so healthy and like any other baby but I know the truth and it is so sad to think about the hard times we have ahead when she will eventually leave us. I will be sure to have her little footprints made into a necklace that I can wear everyday though and if she survives long enough to have casts done, I want to frame her lovely rocker bottom feet and clenched little fists. It is so cruel that this conditions robs these children of their lives because I knoe despite all their difficulties we would love nothing more than to look after them and make them smile and revel in the simplest of pleasures.

I hope one day I am blessed to be pregnant again and I will tell her siblings all about their special older sister x

@DontCareBear You... were destined to be this angel babies mother no matter what you choose. What a beautiful soul you are. I am in tears with sadness and joy reading this, I cannot fathom the position you are in right now. This lucky little cherub with have parents like you both, listen to your heart and remember: no matter what you choose, it is all out of unconditional love.