Help! FTM in terrible distress: just learned than 1 of my unborn twins has a serious birth defect

RMM1204 · January 2016

Has any other mom been told the devastating news at a 2nd trimester ultrasound that one of your babies had a serious birth defect? If so, I would love to hear your experience and any advice you can give.

HBamama2B · January 2016

I haven't as my scans are next Monday and two weeks after, but wanted to say I'm really sorry for your news. Did they give you insight into potential outcomes or possible measures to correct? Hopefully others on here can help, and there is a high risk board too where moms may be able to offer additional insight. again, sorry you are going through this!

lm45678 · January 2016

I don't have any experience or advice- but just wanted to say that I hope everything works out for you!

VikingGirl12 · January 2016

My son was born with heart defects and my daughter due in June has Down syndrome.
What type of defect? They can vary so much.
Hang in there mama!!!

Bee112309 · January 2016

I have, with my second daughter. At her anatomy scan, they discovered a mass of cysts on her right lung, which was so large that it was compressing her heart. We spent the second half of my pregnancy seeing multiple specialists, discussing fetal surgery, and hoping that she would not go into fetal heart failure. I am happy to say that she did survive until birth, and surgeons were able to remove the mass; she is now a happy, healthy almost-3 year old. It was, by far, the hardest period of my life, though. Please let me know if you need a sympathetic ear to talk to; I'd be happy to be there for you.

crdo · January 2016

No experience here, but just wanted to offer well-wishes and support. I hope all turns out well for your babies!

RMM1204 · January 2016

Thank you everyone!
The perinatologist diagnosed baby B with hypoplastic left heart. We have an appointment scheduled with a fetal cardiologist in 2.5 weeks (long wait time because world renowned hospital and test takes several hours so they don't see many patients a day). I am going out of mind and can't stop crying. My DH is struggling as well but keeps harping on the fact that baby A is healthy. Which is wonderful, but is so far from my mind.
Has anyone dealt with a baby with a heart defect, or any other fatal defect, and felt all consumed with the fear that u can't handke (financially or emotionally) what will happen once the baby is here? If so, what did you do?

VikingGirl12 · January 2016

My son has three holes in his heart, his ductus valve didn't close when it should have, and he has a very narrow aorta. We didn't know until he was born. We were so so so devastated as we didn't have any idea and they were talking about where they would transfer him to do surgery etc. But let me tell you, we were assured by the pediatric cardiologists and neonatologists that there's not much they can't fix these days. My son is a healthy almost two year old. You are going to feel pain, anytime anyone tells you that your baby has something wrong you will ache for them and wish it were you. Just wait and see what they say and try to stay calm.

RMM1204 · January 2016

Thanks @VikingGirl12
Unfortunately this condition can't be fixed just maintained. I'm so scared.

etr152517 · January 2016

I'm so sorry you're going through this. I don't have any advice for you but wanted to send well wishes. FX for you and baby!

audmomout · January 2016

My nephew has HLHS. They didn't discover it until days after birth, so it is a miracle he survived. We just celebrated his 1st birthday last month. Because yours was caught before birth, your doctors will have a plan already in place to take care of your LO at delivery! It's a long road, but there are so many beautiful and happy success stories of children overcoming HLHS and leading relatively normal lives. Praying for you and your babies!

Flutterby00 · January 2016

Is a heart transplant an option after birth? My mom had a heart transplant and was told that there are (unfortunately) a lot of infant organs typically available whereas adult organs are much harder to come by.

TunieBee · January 2016

I am so very sorry you are going through this. I can't imagine how devestated I would be. However, I have heard amazing things about surgical options for HLHS which increase survival rates to nearly 90% (and not just transplantation). This is so far from my area of specialty but I would be happy to do some research for you if that would be helpful. Perhaps the experts will offer some more encouraging news?

BOH1025 · January 2016

DS who is now 4.5 has a congenital heart condition. We did not know of this until he was born. luckily we live in a city with one of the best fetal heart programs in the country and did not have to travel. Educate yourself as much as possible and find other heart moms to talk to. There are a few heart mom Facebook pages. I am here if you want to talk. Good luck. I will keep your baby in my prayers.

BOH1025 · January 2016

Also, I have a friend who's daughter has hlhs and after several surgeries is living a very normal life. stay positive!

aimz2377 · January 2016

*lurking from july*

My niece has HLHS and just went through surgery last month. Hers was diagnosed before her birth and the doctors were prepared and had a plan in place. She's now 7 months and is all smiles and a very happy baby.

Rosehip15 · January 2016

I'm so sorry that you're dealing with this stress. I'm a pediatric cardiology nurse, and have patients with the whole gamut of congenital defects. You're right that it can't be cured, but the surgeries are increasingly successful. I'm glad you're having a consultation at a major center - that is absolutely key. They'll be able to give you a more detailed picture of everything. Hang in there.

angbhylt · January 2016

So sorry to hear you are going through this and I will be praying for your family. I do not have experience with my own children as this is my first however I can share an experience that my sister in law had with my nephew. While I do not know your exact circumstances, I highly recommend second opinions. My sister in law was told that my nephew would have downs syndrome, heart defect, only one kidney and other organs were (supposedly) not developing as they should either. They said if he made it full term he would likely not survive long. They were encouraged to terminate the pregnancy. Against Drs advice they continued with the pregnancy, monitoring everything closely. My nephew was born close to his due date, considerably healthy. He was born with only one kidney but otherwise the drs were wrong, very wrong. He is now 8 (almost 9) and lives a completely normal life. I obviously understand that this is not always the outcome and that our family is lucky however I hope that you will find this encouraging in some way. Like I said, I will keep your family in my thoughts and prayers! Please keep us posted

PhoebeJune1984 · January 2016

Lurker here...
*Trigger Warning*
I have not experienced it personally, but I have a friend that has. She found out at her 20 week scan that one twin was developing fine, and the other twin had a lot of problems (organs not developing, missing a few organs, etc). She could feel him move the whole pregnancy, but they knew that as soon as his umbilical cord was cut, it was up in the air how long he would live. For as devastated as they were, they were very open about it on social media, and the outpouring of love was amazing. They did announce his name at the same time they announced the other twins name, and upon delivery, they had a photographer with Now I Lay Me Down To Sleep, in the OR (she had a c-section), document the moments that they did have with him. He lived for about an hour, and passed away in their arms, their parents were able to come into the recovery room so they could meet their grandson (if they felt comfortable). This was five years ago, they have since had another child, and we were talking about it recently and she said that she felt that because it was twins, she dealt with the loss better than she believes she would if it was a singleton, because she knew that she had another newborn that she had to focus on.

I am sorry that you didn't get the news that you were hoping for, but there is also the positive that the outcome could be so much better once baby is born. So many times, they prepare you for the worst, and baby is born in better condition than they are anticipating. I do agree with the previous poster, that with anything serious like this, it is nice to have a second opinion. My other friends brother was born with HLHS, and he is 20 years old, and lives a pretty normal life....playing basketball and everything. Hang in there!!

ae252525 · January 2016

Oh I'm so sorry! We have a 15 month old with hypoplastic right heart. It was the most life changing, devastating day of my life. I know the emotions your dealing with and going thru as I was there not that long ago! The heart world can be super scary but when you have a team you trust it can be wonderful and amazing. Our daughter had surgery at 5 months old. She had the Glenn and will have another open heart surgery at 3 years old. She is thriving and happy and otherwise healthy. It has not been an easy road but I have grown and I'd do it all over again. Ok so there are a ton of heart pages on Facebook which offer great support. I'm here for you too if you have more questions. Hang in there.

dennyandlee · January 2016

Thinking of and praying for you and your family!

RMM1204 · January 2016

Thank you everyone for your encouraging thoughts! it goes so much farther than you probably even know.
@ashlyeaston - I hope it's alright but I sent you a pm.

lm45678 · January 2016

RMM1204 said:
Thank you everyone!
The perinatologist diagnosed baby B with hypoplastic left heart. We have an appointment scheduled with a fetal cardiologist in 2.5 weeks (long wait time because world renowned hospital and test takes several hours so they don't see many patients a day). I am going out of mind and can't stop crying. My DH is struggling as well but keeps harping on the fact that baby A is healthy. Which is wonderful, but is so far from my mind.
Has anyone dealt with a baby with a heart defect, or any other fatal defect, and felt all consumed with the fear that u can't handke (financially or emotionally) what will happen once the baby is here? If so, what did you do?

I'm so sorry you're going through this. I don't have much personal experience but I wanted to add that I have a student (I'm a school nurse) who has HPLH, she is currently in the 10th grade. She gets tired easily and checks in with a cardiologist regularly, but for the most part she is a normal, beautiful, sweet child. She's even one of our cheerleaders!

I know her road was rough in the beginning, but for the most part she has a pretty normal life.

Hoping for the best for you!

candicek15 · January 2016

I don't have any experience with this but just wanted to send some creepy internet hugs your way. Hang in there! It sounds like there is lots of support out there for you and that it's great news this was found early as well!

ae252525 · January 2016

RMM1204 said:
Thank you everyone for your encouraging thoughts! it goes so much farther than you probably even know.
@ashlyeaston - I hope it's alright but I sent you a pm.

@RMM1204 yes I'm glad you did and I'll respond I just don't know how to check them. How do I find the inbox??

RMM1204 · January 2016

@ashlyeaston- When you go to the community section, you'll see "inbox". Go there.

mytinc · January 2016

@RMM1204 - I'm also the mom of a boy with HLHS (September 2014). He's 16.5 months old and doing amazingly well. What kept me sane during the remainder of my pregnancy was research and getting as much good/reliable information as possible so that I would know what the doctors were talking about. It's absolutely important that you research the hospital where your child will have surgery. Not all hospitals are equal when it comes to complex pediatric heart surgery. This link shows an independent ranking of programs. https://health.usnews.com/best-hospitals/pediatric-rankings/cardiology-and-heart-surgery. I also follow Facebook pages with information that supports families (you're definitely not alone) like this one https://www.facebook.com/parentsCHDwarriorangel/?fref=ts. And lastly, I encourage you reach out to Sisters by Heart - an organization that supports families with new diagnosis of HLHS.

Please feel free to reach out via PM. I'm not on the bump much these days, but I check in from time to time specifically to see if there are moms with this diagnosis that are looking for support. I couldn't find much about it on the bump when I was pregnant and I know how badly I wanted to reach out and talk to someone who had been there.

Best of luck to you and your baby.

RMM1204 · January 2016

Thanks @mytinc!!! I sent you a pm. Would love to chat.

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Help! FTM in terrible distress: just learned than 1 of my unborn twins has a serious birth defect

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