Becoming a Mom with CHD

Growing up to have a family of their own is the dream of many little girls, but when you have CHD, pregnancy can be a great risk. Still many patients can safely and successfully carry a baby. This week, Conquering CHD spoke to Melissa Lewis, she shares with us her journey to the birth of her daughter.

Deciding to Get Pregnant

Conquering CHD: Why did you think you couldn’t or shouldn’t get pregnant? Did your doctor or care team tell you that would have trouble with a pregnancy?

Melissa: I was told ever since a small child that I wasn’t allowed to have children. No matter what. I remember my mom told me that first, but she didn’t go into great detail on why not. When I got a little bit older, my pediatric cardiologist told me the same thing. My doctor said that my heart couldn’t handle a pregnancy, that I would quickly go into heart failure.

Conquering CHD: Did you get a second opinion?

Melissa: Once I aged out of pediatric care and moved away from my town, I found a cardiologist who specialized in congenital heart defects near me. I went for a regular appointment to meet them for the first time. There it felt like my whole world opened. The doctor asked me if I was thinking about pregnancy. They looked at me sideways when I told them that I was told to never get pregnant. They were most baffled that pediatric doctors were telling their patients things like this, and sadly said I certainly wasn’t the first one to say it either.

Conquering CHD: Why did you ultimately decide to have a baby? How did you make that decision?

Melissa: I had been very lucky as a child; although I was on medications all throughout my childhood, I wasn’t one to have complications and end up hospitalized. My heart and my wellbeing didn’t really change as I aged. I was very active and had a fulfilling life. I had wanted a child all my life, a child I was told I could never have. So once my husband and I found out that I was “allowed” to, I went ahead and did whatever testing I need to in order to reassure the doctors that I would be a good candidate for pregnancy and have a viable child. We sat down with the high-risk OB and went over what could happen with the baby and if the baby could have a heart defect too. Once all my tests came back, the care team and I felt confident that I would be able to carry a child to term, so long as I didn’t push myself too much. But I only made that decision because I happened to have found my cardiologist, who seemed to have all the answers and all the resources.


Conquering CHD: What was your pregnancy like? Did you have any complications?

Melissa: I became pregnant a few times, but ultimately miscarried. I had to have a DNC at one point, and
another time, I had an ectopic pregnancy. But total; we have a 4 angel babies. We were told this could happen to patients like me, our cardiac output doesn’t change well with the stress of added blood and needing to pump more, that it why it’s hard to stay pregnant. When I became pregnant again, I asked to be on progesterone medication for the first 20 weeks. Women like me can have a late miscarriage, up to 20 weeks. It was a very stressful time, although in the beginning, I didn’t have any complications, just my own wondering mind.

In my second trimester we noticed I had anterior placenta, so I almost never felt the baby kick. Baby also started to slow down on the growth chart starting at 53% at 20 weeks falling to the 10% at 31 weeks. Once I hit the third trimester, my blood pressure slowly climbed up. I was diagnosed with gestational hypertension and was kept in the hospital until delivery. I was 32 weeks when I was admitted. From then on I had to have my blood drawn every day, sometimes twice a day. I also had to have the blood thinner shots which made my whole pregnant belly all black and blue. When they admitted me, they give two steroid shots, incase the baby was born, over the course of two days. On the second day the steroid shot sent me into heart failure, my BNP shot up because pressures changed in my heart,
my O2 fell, and I just felt sick and sleepy. I was put on meds and oxygen to correct it, I don’t think I truly knew at the time how bad I was.

After a few days I was feeling better and was out of bed walking around. When I hit 34 weeks, almost 35 weeks, I started getting short of breath. With everything going on I didn’t want to get too weak or out of breath before birth, I wanted to keep my energy. We decided to induce at 34 weeks and 6 days.

Conquering CHD: Did you see a high-risk OB/GYN and ACHD Cardiologist? Did your OB and cardiologist
manage your care together while you were pregnant?

Melissa: Yes, I saw a high-risk Ob/GYN along side my cardiologist. They managed everything together
starting before I was even pregnant. When I told my cardiologist I wanted to move forward with becoming pregnant, he sent me down the hall to the high-risk OB. They each explained to me what could happen. Overall, we had a great experience with them, despite the miscarriages and ectopic pregnancy.

Delivery and Recovery

Conquering CHD: Can you tell us about your birth plan? Did you have your baby at a center that could manage
your care as well?

Melissa: My Birth plan was all my hopes and wishes. My plan was to always have the birth at the hospital with my care team right there. I wanted to be able to labor where I was most comfortable. I didn’t want to be induced because of the pain associated with it, and once in pain, I wanted the epidural. And of course I wanted my time with my new baby on my chest with no one interfering, as well as delayed cord cutting.

Conquering CHD: How did delivery go? Were you and your baby ok?

Melissa: My reality, however, was much different from my plan. Mainly starting out at being admitted 3-4
weeks early. Since we then planned delivery as a casual conversation, it felt so surreal. I had to then be induced, which took a number of hours and pain. I was able to labor in a tub for some time until the pain was too much, then waited for an epidural to be placed.

From then I was in a bed unable to get out. I was able to sleep a bit which was nice, tried to save my energy. After a few hours we were progressing well, the nurses kept coming in telling us that with every bit of progress the baby’s heart rate dipped. The baby continued to not do well, so we switched the plan to a C-section.
The baby’s heart rate had been dipping with ever contraction because the cord was wrapped around her neck twice, and the blood circulation was being cut off. I was able to see her for a brief moment when my husband carried her over before she was taken to the NICU. While there, she had oxygen for a little while, but by the time I was
stitched up and wheeled right to her, she was already off of it. She only needed the warmer for a day, that night she started to keep her own temperature. She was taking a bottle almost right away; breastfeeding was a bit harder for
After the birth came the recovery. For baby, she was in the NICU for week for observation, then released before I was. I, however, was having difficulty with ridding my body of the excess fluids. It was in my legs mostly, but you could see it in my fingers and face too. The doctors were saying that recovery was where we’d have the most difficulty. I was first put on the IV diuretic, which helped rid my body of the fluids, then when put on a pill form, I was instantly gaining weight and retaining the fluids. It took a few days to balance me out. While I was recovering, I developed Shingles, which added another complication and was very painful.

Once I was finally discharged, about a week and a half after the birth, I had to come right back in the following day. I spiked a fever, and it turned out I had an infection in my c- section scar. I was in the hospital back at the L&D floor hooked up to multiple IVs, trying to find a medication that would get rid of it and had to have a wound vac. put on me. That took nearly another two weeks. My husband had to come back with me, so I could have time with the
baby. After I was released, I left with the wound vac. on for another month and had to go in and get it cleaned out and have the bandages changed. Afterward, I had a few cardiac visits and was given the good news that I was maintaining my stats well.

Going Home

Conquering CHD: Is your baby heart healthy?

Melissa: Yes, we already knew she was heart healthy at around 20 weeks gestation, we did a
very specific scan to see the baby’s heart in detail. That’s why we didn’t really have to factor specific needs for the baby into the birth plan and I was allowed to do chest to chest contact. We were told to have another scan before we left the hospital to double check if there were any small holes. The baby did have one very tiny hole. We followed up with it, and luckily, all the doctors say they cannot hear a murmur and the hole seems to have closed.

Conquering CHD: How is parenthood going? What’s your favorite part about being a mom?

Melissa: Parenting is going smoothly, it was the one thing I always wanted, to be a mom. I love to
watch her flourish and try new things while learning the ways of the world.

Melissa Lewis was born in Huntington, NY back in 1988, with Hypoplastic Left Heart Syndrome. She went on to have three surgeries that saved and preserved her life. Melissa was a very active child running around and playing sports. As a young adult she moved across the states, all the way to Washington,  and found herself living just above Seattle. Melissa was a nanny in Seattle for many years, and now she works as an admin for a construction company. Melissa is married and gave birth in 2020 to a baby girl.

Comments are closed.

« Previous EntryNext Entry »