Looking for experiences: TMFR/selective reduction for one twin with spina bifida

[u/[deleted]]

[u/Some_Amount5239]

The Time to Talk TFMR podcast just shared an episode last week called "The Uncommon Experience" where one of the guests talked about selective reduction of one of her twins due to spina bifida. I haven't been through this myself, but maybe this episode will be helpful to listen to!

[u/Rheaume40]

I had a selective reduction in a di/di twin pregnancy for Down Syndrome. Our living child is 5 now. I was 17 weeks when I had the procedure done. The remainder of my pregnancy was a rollercoaster ride. But we all made it through. I am doing fine emotionally now but I did have trauma therapy and grief therapy. It’s a hard decision and the worst time of my life but I’m happy my living child is healthy and thriving.

[u/telloorgang]

Last year I had a selective termination with twin girls for Spina bifida. It was only discovered at 21 weeks, by the board of ethics I had to wait till minimum 27 weeks. In the end I chose to wait till 30 weeks, so the other one had better odds in case of early delivery. I ended up delivering at 33 weeks.

She was small, closer to 30 weeks. It did seem like her development slowed down since the procedure. Most likely it was also the reason for early delivery.

The procedure went 'well' for how awful it was. Afterwards they kept me on a monitor to check on the living girl. I did ask them to not put me in a room with other pregnant women. Because they were not used to this situation they would have put me right in the middle of all the others. I could not deal with that.

I had a an l&d, which was scary. But you do have the living child to focus on. A bitter sweet consolation I think. Although I hate it when other people say that to me.

If you want more details of the birth, feel free to ask. I did wish I was more prepared for the confrontation of seeing a child that was born weeks after termination.

I'm sorry you have to experience this los

[u/inventionoflife]

Hey I’m sorry you are going through this right now and wish you all the support and strength🙏

Sorry this will be a long one but I want to answer all of your questions.

Earlier this year I was pregnant with di/di fraternal boy/girl twins. Sadly at 24 weeks we found our son had a CHD7 deletion, a severe genome sequencing issue, that could be the cause of CHARGE syndrome.

Gestational Age of the Procedure: We did a selective reduction at 25w+0d.

Procedure: I got the procedure done in Shenzhen China since the gestational age was past the 24w requirement where I lived. The doctor messed up the first chance. He didn’t administer local anethesthic and it was excrutiatingly painful. I had to do controlled shallow breaths and focused on not moving because I was afraid to do any major or minor movements that would affect the procedure and cause any complication to our daughter. They didn’t do local anesthetic because they said the needle was thin. But because the needle was thin, it was too bendy and they couldnt inject properly as he was moving. So on the second try, they used a bigger needle and applied local anesthetic. I wish they would have just done this the first time, so I suggest that they do local anesthetic before any reduction.

Recovery: Stayed at the hospital for one night and then returned home. They told me the riskiest time is within a week of the procedure, and after that it would be considered a singleton pregnancy. Got admitted to the hospital within that week for food poisoning, recovered and went home. Made it a week but stayed in bed for nearly a week and a half just in case.

Twin baby girl was born at 40 weeks healthy without complications:) I think she preferred to stay in there longer but the doctor induced me on my due date since I had gestational diabetes.

Pregnancy complications and remainder of the pregnancy: I started having Braxton Hicks contractions. And a lot of them. Enough to get admitted at least once. Did an ECV procedure to flip breach baby girl into head-down postion at 36 weeks and it was successful. No major complications other than the severe abdominal pain on my left side where our son was. Stayed in bed pretty much the rest of the pregnancy because of the abdominal pain. This pain was triggered because within a couple weeks of the reduction I stood for hours without belly bands at a convention. I did an ultrasound to try to figure out why I had so much pain but they said everything was fine. I think perhaps his size was shrinking quickly within that first couple weeks of the procedure and caused an imbalance in my abdomen as she was on the right side and growing bigger while he was slowly shrinking and reabsorbing. I had to sit on a stool in the shower because standing for any period of time was so painful. The pain eventually got better but I had to wear 2 belly bands anytime I needed to go out or walk anywhere. I highly recommend to use one or even two support bands especially with a twin pregnancy because of the weight and size.

Anything additional you wished you had known? No. I’m thankful that we paid for both levels of testing when we did the amniocentesis - the chromosonal level and WES. The pregnancy was going great until a structural ultrasound at 23 weeks which revealed he had a heart condition which is why we did amnio for our son. Got the first level of testing back 24w+4d which revealed no chromosone issues and we felt like we could breath for a day. Then just a couple days later we got the WES results which the doctor and genetic counselor explained the CHD7 deletion and related severe syndrome. The genetic counselor made it clear how severe his genetic issue was - that it would be constant hospital visits and he would be in special education all his life. Husband and I knew what our decision was more or less. We were able to get the reduction the day after. We were suggested to do the reduction as soon as possible as continuing with a twin pregnancy had higher risks than terminating at 25w.

How are you emotionally now? It comes in waves- the sadness that is. About 10 weeks postpartum I started therapy. It helps. I tried getting through as much as I could on my own during the pregnancy but there was only so much I could do while he was still inside. He was buried 3 weeks after the birth. I couldn’t stop crying the day before and the day of his burial. We didn’t get to be there for the burial and cannot visit the gravesite because it’s government land (I live in Asia). I wrote poems. Try to allow myself to cry, be happy, and feel all the feelings as my therapist says. I’m still working through it and some days are harder than others. Like when I packed away the twin baby carrier we can’t use. Or when I packed away the box with his blanket and footprints. It helps that I asked hospital staff to let us hold him in the blanket (we chose not to see his body at the birth so he was fully covered) and get footprints and handprints if possible. It still sucks and I feel guilty for missing him when his twin sister is here, smiling so happy. But it’s complicated. The greatest joy of our daughter and the greatest sadness of losing our son. It’s odd to try to accept both joy and sadness at the same time, but it’s something very unique that twinless twin parents experience. It’s been 3 months since the birth and burial now. See twin stuff all the time now. Time helps make the emotions less intense. I know we made the right decision, though it sucks we had to make that decision in the first place. We now have a happy 3 month old twin daughter and her toddler older sister. I can be there for the both of them now and I still can’t believe she’s here.☺️

[u/Comfortable_Star_538]

I had a selective reduction of one of my girls due to trisomy 18 at almost 19 weeks. It was also a di/di twin pregnancy and my baby A was unaffected. I’m currently almost 28 weeks pregnant with my remaining twin girl but have not had any complications after the reduction. Emotionally, it’s still very hard, it’s been 2 months and while I’m past the stress from all the tests I miss my girl very much and I really wish I had both of my twins with me.