Fetal Echo - IVF - Abnormal finding after normal anatomy scan

[Anonymous]

Hi IVF moms
We just had our mandatory fetal echo after a normal anatomy scan and have been asked to return for another in 4 weeks. Have other IVF moms had to go back more than once?

We're in shock re the abnormal finding after pgt testing, all the genetic blood testing, nuchal scan, anatomy etc. Dr doesn't know if it's mild or serious yet hence the follow up. Would love to hear stories one way or the other.

[Anonymous]

Heart defects are indeed more common in IVF conceived babies. My understanding is that these types of congenital heart defects turn out fine with careful monitoring and early intervention. It is the type of thing that will be scary, but most of these babies thrive. Did they ask you to come back because they found something of concern or because they didn’t get clear views. We were the later.

[Anonymous]

How many weeks were you when getting your fetal echo? I just had mine at 24 weeks at GW by a perinatologist from Children's Hospital. She mentioned that although they can be done anytime betwern 18 to 24 weeks, it's preferred to have them closer to the 24 week mark when the heart is more developed.

[Anonymous]

Anonymous wrote:Heart defects are indeed more common in IVF conceived babies. My understanding is that these types of congenital heart defects turn out fine with careful monitoring and early intervention. It is the type of thing that will be scary, but most of these babies thrive. Did they ask you to come back because they found something of concern or because they didn’t get clear views. We were the later.

Op here. They found something of concern. I hope so, just feeling like there's nothing we can do but wait.

[Anonymous]

Anonymous wrote:How many weeks were you when getting your fetal echo? I just had mine at 24 weeks at GW by a perinatologist from Children's Hospital. She mentioned that although they can be done anytime betwern 18 to 24 weeks, it's preferred to have them closer to the 24 week mark when the heart is more developed.

Op here. 22 weeks. I didn't know that about 24 weeks...I thought the heart was already developed pretty early. That's helpful.

[Anonymous]

Hard to say without a tentative diagnosis, but many heart defects can resolve on their own or require maybe one surgery. Obviously, some are much worse, but so many really aren’t too too bad in the scheme of things that can go wrong.

[Anonymous]

My nephew was born with a heart defect. He had surgery when he was two, it was very nerve-wracking but he’s ten and very healthy, athletic and strong. He has follow up visits each year with the cardiologist and his prognosis is excellent, no reason to suspect he won’t have a normal life.

So even a significant defect isn’t necessarily catastrophic. It’s all scary, sending you good thoughts.

[Anonymous]

Anonymous wrote:

Anonymous wrote:How many weeks were you when getting your fetal echo? I just had mine at 24 weeks at GW by a perinatologist from Children's Hospital. She mentioned that although they can be done anytime betwern 18 to 24 weeks, it's preferred to have them closer to the 24 week mark when the heart is more developed.

Op here. 22 weeks. I didn't know that about 24 weeks...I thought the heart was already developed pretty early. That's helpful.

When I went for my fetal echo for a baby naturally conceived bc my older has a heart defect, I had to wait until 28 weeks. They might just need baby bigger to see for sure what is going on. I was told that fetal hearts can have problems like holes that then close by themselves before birth - if we weren’t watching, we wouldn’t even know it happened. So I wouldn’t assume your baby will have a heart problem at birth yet. And, if she does, it might not impact her life much or at all, so don’t borrow trouble.

[Anonymous]

Yes! I had to go back. I had a mandatory fetal echo for my first IVF baby (outside DC metro area) so insisted on one for my second (Georgetown didn't require it at that time). Regretted that insistence when Children's had me return. I had to back at least once (possibly twice). I don't recall the same of what they thought might be an issue but it sounded bad. I had to bring my newborn in for an ultrasound a couple months after birth, and everything was fine.

Since it was my second I didn't have to worry about having/not having a shower, but for my first I put off telling people and having a shower until as late as possible. After years of treatments, I sort of held my breath my entire pregnancy. Hugs, OP. Like when people get called back for other tests (e.g., mammograms) chances are there is nothing wrong. (And ignore the PP with the worst case scenarios, our babies had so much genetics testing that we would know if it was something like that).

[Anonymous]

Hi OP, I am sorry you are going through this. I went through this (but not IVF baby) and it is very scary. My doctor caught the abnormality on the 20 week anatomy scan and we were sent to fetal echo the next day. The fetal echo technology is very advanced and hopefully you'll get more clarity at your next appointment. Did they give a specific condition or did they just say abnormality? We were monitored every 4 weeks by the prenatal cardiologist and then weekly by the MFM to check for fluid buildup or any other signs of stress.

I would recommend going to Children's National, their heart clinic is superb and Dr.Donofrio helped us through 20 weeks of pregnancy and delivery. One thing to note is that the heart does change a bit through pregnancy and closer to delivery. At 24 weeks we were told our baby might not need surgery at all or if she did it could wait until she was older. Unfortunately, our baby's condition got worse in the last two weeks of pregnancy and did require a C-section and heart surgery before we could go home. We were in the cardiac ICU at Children's and are so fortunate to have some of the world's best doctors in our backyard.

Start therapy if you aren't going already. Find someone who specializes in prenatal care or special needs postpartum. My therapist helped me work through some of the issues you mentioned such as hosting a shower, buying baby stuff, getting the nursery set up, etc. We decided to have a shower and I'm so glad we did since we probably won't have any other kids. As for buying baby stuff, I feel your pain and I didn't buy anything other than newborn and 0-3 month clothes. Therapy helped me immensely.

Best of luck. This is tough, but you will get through it. I'm sitting next to my happy, healthy baby now. She is thriving and I pray things will be ok for you and your baby.

[Anonymous]

I am Asian and it's a big no-no to do a baby shower in our culture. Regardless of having a shower or not, OP, I hope you and your baby have a good outcome.

[Anonymous]

Anonymous wrote:Hi OP, I am sorry you are going through this. I went through this (but not IVF baby) and it is very scary. My doctor caught the abnormality on the 20 week anatomy scan and we were sent to fetal echo the next day. The fetal echo technology is very advanced and hopefully you'll get more clarity at your next appointment. Did they give a specific condition or did they just say abnormality? We were monitored every 4 weeks by the prenatal cardiologist and then weekly by the MFM to check for fluid buildup or any other signs of stress.

I would recommend going to Children's National, their heart clinic is superb and Dr.Donofrio helped us through 20 weeks of pregnancy and delivery. One thing to note is that the heart does change a bit through pregnancy and closer to delivery. At 24 weeks we were told our baby might not need surgery at all or if she did it could wait until she was older. Unfortunately, our baby's condition got worse in the last two weeks of pregnancy and did require a C-section and heart surgery before we could go home. We were in the cardiac ICU at Children's and are so fortunate to have some of the world's best doctors in our backyard.

Start therapy if you aren't going already. Find someone who specializes in prenatal care or special needs postpartum. My therapist helped me work through some of the issues you mentioned such as hosting a shower, buying baby stuff, getting the nursery set up, etc. We decided to have a shower and I'm so glad we did since we probably won't have any other kids. As for buying baby stuff, I feel your pain and I didn't buy anything other than newborn and 0-3 month clothes. Therapy helped me immensely.

Best of luck. This is tough, but you will get through it. I'm sitting next to my happy, healthy baby now. She is thriving and I pray things will be ok for you and your baby.

OP here. They have just told us there is an abnormality in the blood flow in the pulmonary vein so far, and that it could be mild or very severe (but they won't know without monitoring, and even still may not know the extent until delivery).

[Anonymous]

Op again. Thank you for that very helpful post. Therapy is a very good idea and I will find someone soon. We had been thinking about Children's here or Philly already, but are also trying to remain positive. It's such a balance between trying to put positive intentions into the world and preparing for the worst.

[Anonymous]

Anonymous wrote:Hi OP, I am sorry you are going through this. I went through this (but not IVF baby) and it is very scary. My doctor caught the abnormality on the 20 week anatomy scan and we were sent to fetal echo the next day. The fetal echo technology is very advanced and hopefully you'll get more clarity at your next appointment. Did they give a specific condition or did they just say abnormality? We were monitored every 4 weeks by the prenatal cardiologist and then weekly by the MFM to check for fluid buildup or any other signs of stress.

I would recommend going to Children's National, their heart clinic is superb and Dr.Donofrio helped us through 20 weeks of pregnancy and delivery. One thing to note is that the heart does change a bit through pregnancy and closer to delivery. At 24 weeks we were told our baby might not need surgery at all or if she did it could wait until she was older. Unfortunately, our baby's condition got worse in the last two weeks of pregnancy and did require a C-section and heart surgery before we could go home. We were in the cardiac ICU at Children's and are so fortunate to have some of the world's best doctors in our backyard.

Start therapy if you aren't going already. Find someone who specializes in prenatal care or special needs postpartum. My therapist helped me work through some of the issues you mentioned such as hosting a shower, buying baby stuff, getting the nursery set up, etc. We decided to have a shower and I'm so glad we did since we probably won't have any other kids. As for buying baby stuff, I feel your pain and I didn't buy anything other than newborn and 0-3 month clothes. Therapy helped me immensely.

Best of luck. This is tough, but you will get through it. I'm sitting next to my happy, healthy baby now. She is thriving and I pray things will be ok for you and your baby.

Agreed Dr. Donofrio is amazing. She told me after my scan that there *might* be a hole, but it’s too soon to tell and they can help if something does turn out to be wrong. She saw my son at 4 weeks and everything is fine. But I was so reassured when she said if there is a problem, they’re going to fix it. We’re lucky to live here - outstanding doctors for babies. Good luck!

[Anonymous]

Anonymous wrote:Op again. Thank you for that very helpful post. Therapy is a very good idea and I will find someone soon. We had been thinking about Children's here or Philly already, but are also trying to remain positive. It's such a balance between trying to put positive intentions into the world and preparing for the worst.

Children’s has the #1 NICU in the country and is a top 5 or 10 Children’s hospital overall (depending on the year; hovers around 5-6). Don’t go chasing a marginally bigger name and put yourself away from your home, you support system, etc. If you actually end up need advanced care over a period of time, you’ll be very glad you’re at home; if you don’t, you’ll be very glad you’re at home. Seriously. I’d advise differently if you lived in podunk, but Children’s is amazing… especially its NICU.