Hi Risk defect - termination? Help

[tami2k]

Hi
Just wanting some advice on possible similar experiences. My bloods confirmed I was high risk for all Edward pataus 1:5 and Down syndrome 1:73. Today the scan confirm the nuchal transparency has increase from 5mm (at prev scan ) to 7mm and the fluid was all around the featus. Doctor said very likely 70% of a chromosomal & or heart defect. They couldn't do the CVS today due the placenta being behind so going back next week.
A 1:5 / 20% is the highest risk they offer so it's all going in one direction. This pregnancy was already a shock as already have a 15month son who I'm just about coping wit.

The doctor discussed options of termination, usually it doesn't make it through the pregnancy and even when it does it's still born or on the rare occasion can live upto 1st birthday but will have many defects. I'm not one for termination but after researching on this I'm leaning more that way as it will suffer.
I'm just wondering has anyone had similar experience and possibly undergone this.
I'm trying to be strong and prepared tho I'm breaking inside. The decision to end pregnancy is extremely difficult and v personal
Any help / advise appreciated x

I would wait to you have a cvs It seams a bit baby could have this, baby could have that. It must be a very stressful. Check out www.soft.org.uk it is a support group for people effected by T13 and T18. (Edwards.)

Thanks @june2007 I will wait for the cvs results I guess I'm just trying to be prepared if the results come back as they're saying. What's making me lean towards the difficult decision of ending the pregnancy is that there's no cure for these abnormality whereas with a heart condition there are many things that can be looked at. I guess I will wait n see x

Sending you my thoughts @tami2k. I know waiting for answers is extremely difficult.
I have been in a similar situation (my baby had T21 with other difficulties) and after 2 failed attempts at CVS I had an amniocentesis at 14 weeks. I was given 1:5 odds of baby having T21 then had a NIPT which came back high risk for T21, followed by amnio confirming. It was a dreadful time. I decided to have a surgical termination at 16 weeks via Marie Stopes. A very personal and heartbreaking decision but I know it was the right one for me and my family. Just know you aren’t alone. I found talking to Antenatal Rights and Choices (ARC) to be quite helpful. I’m happy to answer any questions about my experience if you want to - just send me a message.

@CrispMonster12 which procedure did you have? Not sure which 1 to go for leaning towards surgical as seems less painful but not wanting any lasting affects as want other children

With one of my daughters the NT measurement was 9.5. We were told she probably wouldn't survive and that if she did she would probably be severely disabled. She did survive and has a very rare chromosome abnormality. She has delayed development, mild learning disability, is deaf and has a minor heart defect among other things. But she is an amazing little character and I'm so glad we gave her a chance at life x

@tami2k so sorry you're going through this. I had a surgical tfmr back in April 2019 at 13 weeks. As reassurance for you, I fell pregnant again in the October and my healthy baby boy was born June 2020 with no complications

I found having the time waiting for answers awful but it did help me to have the chance to get everything in place just in case I needed it, which I sadly did. I had a surgical via Marie stopes. I personally would have found a medical much more distressing, but I know everyone is different regarding this. The team at Marie Stopes were fantastic and caring towards my situation. I recovered physically well- just had some cramping afterwards which paracetamol sorted out and bleeding was just like a longer, slightly heavier period. I have had no adverse side effects whatsoever physically and I got my period again about 6 weeks later. I am currently trying again for another baby. I have waited three months after the procedure before trying again as I am taking some supplements to support egg health and I haven’t felt ready emotionally until now. Although my midwife told me there isn’t any reason to wait, just when I felt ready.
Emotionally obviously the recovery isn’t as straight forward and I won’t ever forget my baby. I decided to have a cremation (I didn’t have a service)- a local funeral director sorted it all out with Marie Stopes and they didn’t charge anything at all. My heart goes out to you. There is support out there whatever you decide to do.
@QforCucumber so wonderful and reassuring to hear you have your baby boy xx

Hi Tami,

I went through something similar a month ago when I found out my baby had Acrania - none of his skull was formed which meant he would be completely incompatible with life. I was then faced with the same decision as you - carry to term on terminate.

After doing a lot of research I chose to medically terminate the pregnancy. It was heartbreaking and the whole process was traumatising. I barely slept, ate, kept vomiting. I felt so guilty. My son was 14 weeks and tiny when I saw him. It broke my heart and I don't think I'll ever feel completely the same after going through something like that so I know exactly how you are feeling.

Just remember that you're making this decision as a mother and in your child's best interests. You're strong and you will get through this. Hoping you find some strength that you didn't know you had during this difficult time. Sending love ❤️

@CloseEncountersOfTheTurdKind if you don't mind, can I ask if the generic anomaly was found during testing (if you had testing!) Or if everything looked normal during testing and was discovered after birth? It's amazing to hear the range of experiences that exist.

We decided not to have amniocentesis because we had decided to keep our daughter. The Drs gave her a 30% chance of surviving the pregnancy, and said she would be likely to have something seriously wrong with her. However, as the pregnancy progressed things were more positive because she kept growing and had all her limbs etc. When she was born at 37 weeks she was only 5lbs and had a few days in intensive care with breathing problems. We didn't actually find out her actual diagnosis until she was 18 months old! Her deafness and minor heart defect were picked up very early on, and some of her other issues became more apparent over time. She's doing great though, she keeps exceeding every expectation!
Hope all goes well for you whatever decision you make x

@QforCucumber did u end ur pregnancy due to chromosomal abnormalities? So pleased to hear you had a successful that's what I fear the most any after complications x

@tami2k my baby was diagnosed with alobar holoprosencephaly at the 13 week scan. They gave a 3% chance of survival to birth and even if that occurred babies have never survived longer than a couple of hours after after birth. I had a 3 year old at home and felt the decision was made for us with those odds. There was no way I could let him see my stomach grow etc and then there be no baby, it wouldn't be fair on us or the baby. We waited a few months to try again but knew we definitely wanted more children. Ds2 was a natural birth, 7 days overdue and weighed 7lbs 13oz. I was consultant let due to the complications previously but the consultant signed me off her care after the 20 week scan.

@CrispMonster12 that is v good to know I would also wait a few months before we try again. We did not want a child atm but this loss has left us wanting a child now more than ever. I can't deal with the disappointment each time when ur waiting to be pregnant and results r negative. But it takes time and perseverance x

Thank you so much for sharing - I can't tell you how much I appreciate it.

@QforCucumber I understand it was the right decision for you for sure. The consultant asked me if I am struggling to make the decision to ask myself 'is it fair to let it suffer' and that's when I made my decision (esp knowing it had a heart oerta overriding)

I had a 4.9mm nuchal fold reading many many years ago and it was pre 12 week blood tests to assess overall risk but with the nuchal fold reading combined with my age and whatever other factors they used back then it gave me a risk of 1:17 of chromosomal defects. I had an amino which revealed the chromosomes were normal and at 17 weeks got given the all clear and the nuchal fold was put down to being just one of those things . Then I went for my 20 week scan a few weeks later and she had died inside me. A post mortem did not reveal anything obviously wrong so it was a complete mystery but I'm certain the risk factor I was given at 12 weeks was obviously accurate for something and no doubt now, 17 years later, it may have been a bit clearer what.

At 14-15 weeks I'm hoping the ending of pregnancy won't be too painful (physically) I am coming home to look after a 15month baby who i breastfeed and is a poor eater hence why I am worried about the aftermath and leaning towards surgical procedure but we want other children so thinking which will be best. Thank you to everyone sharing their experiences it helps so much knowing u are not alone xx

@tami2k I went into the hospital at 10am and was home by 4pm. Other than some mild cramping there was no physical pain. The actual procedure took around 40 mins it was the waiting before and after which took most of the day. The staff were fully aware of the situation and made me cry with their kindness!

Hi @tami2k, I'm so sorry you're going through this. I had a TFMR at 14 weeks last year, our boy had T21 + Omphalocele.
I chose a medical termination for several reasons: due to gestation I would've had to organise a surgical termination with an abortion clinic, I felt the need to see and hold my baby and say my goodbyes and tell him how sorry I was. My husband was there with me all along, we're glad we did it this was and it helped us process things.
I found the ARC incredibly helpful all along and after the termination their forum saved my sanity. Physically I wasn't too bad after (although I had to have a MVA procedure 8 weeks later due to retained placenta...)
I too was still breastfeeding my toddler at the time (he was 19 months) and I honestly think he knew something was up. From the moment of our diagnosis he tried to make us laugh all the time, and after, he was simply amazing and wanted extra cuddles and love. It was the hardest decision and yet the easiest one of our lives. We made it for our unborn child, our living son and for us. Whichever you decide, you've got this. Stay strong! Xx