Growing up with CHD, we were often focused on staying healthy or recovering from various procedures, we may not have had the chance to consider how CHD may impact our future life goals, like starting a family. Planning for pregnancy, childbirth, and parenthood comes with a lot of uncertainty for women with CHD, often leading to tough choices. Disha, an adult with CHD, takes us down her difficult path to parenthood, sharing the unexpected steps she had to take to fulfill her dream of being a mom.
When I was born my parents and doctors all thought I was a healthy baby. I was only home from the hospital for a few weeks when my parents noticed I was struggling with my breathing and feedings. After consulting with multiple doctors, my parents were told I was born with a rare congenital heart defect called Double Outlet Right Ventricle. My childhood included frequent doctor’s visits and preventative maintenance surgeries. Additionally, I was limited to no contact sports. Thoughts of someday starting a family weren’t on my mind during these times.
After I got married, having kids became a serious topic. By this time, I had already had 6 open-heart surgeries, several ablations, multiple catheterizations, and other procedures which triggered severe anxiety. The hopes and dreams of having my own biological child were diminishing. After my most recent heart surgery in 2014, my husband and I finally decided to seriously start talking to my doctors about planning a family.
Our first conversation where reality kicked in was with my Congenital Heart Cardiologist. We all agreed that our first priority was mine and the baby’s safety. During the conversation, the doctor told us that although I could physically carry my baby, it would be a high-risk pregnancy. There was a high probability that my heart would suffer arrhythmias which I may not be able to overcome during pregnancy or actual labor if I made it to my delivery date. On top of my health issues, I was dealing with anxiety. I kept thinking of the difficult decisions I may have to make down the road. After consulting with my electrophysiologist, she recommended IVF and using a gestational carrier, if I wanted to have a baby.
My husband and I thought about this idea for a while, as it was truly unchartered territory for us, and we were skeptical of the idea. I did not know a single person who had been through IVF, nor was I familiar with the process of someone carrying a child for someone else. It was all very frightening. I was worried about my relationship with the carrier, the situation at the hospital post-delivery, and what family and friends would say about the idea. But more than that, I was afraid someone would say that I shouldn’t even have kids because of my CHD. With all these thoughts in my head, I thought it would be best to share the news with only immediate family. I didn’t want to hear anyone’s comments.
Finally, my husband and I decided that having a gestational carrier would be our best option. As a first step, we needed to see if IVF would actually work, as that too came with some risks. My doctor felt it was a priority that I go through the IVF process in an inpatient setting, so if any complications emerged, they could intervene. Unfortunately, after discussing my case with several local hospitals and affiliated OBGYNs, many were not comfortable or didn’t have the proper facilities to ensure my safety as a patient. After a few months of hearing this, I started to question if this plan would work and if I would actually be okay during IVF the process. Should I really be doing this? I started to look online and research patient IVF stories, which only made my anxiety even worse.
Finally, after what felt like an eternity, my doctor found a facility that would take me on as a patient and provide the proper monitoring and multi-specialist coordinated care during the entire process. As my medical records were shared, I hit another roadblock. I got a call from my electrophysiologist saying that one of my heart medications caused my thyroid level to be off and I needed to stop taking a key medication right away. Before I started any IVF process, my thyroid levels would have to be under control, which required me to take new medicines and a weekly blood test. It took a month or so to get to a manageable level, but I finally got the okay to proceed with IVF!
For me, the IVF process required three shots directly into my stomach, one of which was a blood thinner. The shots were super painful and left me with bruises. I was in a constant state of agitation and fear. I had to stop taking my anxiety medication, so I always felt a panic attack coming on, not to mention my hormones were all over the place. Everyone around me avoided me, fearing I’d snap. As each day passed, it was getting harder and harder emotionally and harder to perform everyday tasks. At some point in the day, I would just break down crying. I continued to have daily blood tests to check my hormone and thyroid levels. I have such small veins to start with, and each draw buried more and more on each arm. Sometimes I would get poked 3 or 4 times, and they would have to wiggle around in there, which is the worst feeling in the world. Once my levels were considered right, we booked a hotel close to the hospital, so we could get daily ultrasounds and start counting the follicles. My whole body felt off, and I was miserable during the entire process. My only comfort was Panera’s mac and cheese, my conversations with the nurses, and, despite my attitude, my husband’s continued support, his listening to me vent and making those daily Panera runs.
Once the doctors determined I was ready for my egg retrieval, they set up a date where they would basically vacuum them out. On the day of the removal, I was extremely nervous about something going wrong. Being in the hospital and wearing a gown reminded me of having open-heart surgery. The doctors tried to calm me down, but I was just a mess. Finally, they got my IV in, which took a super long time since my veins had been through so much, I was put into a twilight sleep. They were able to retrieve my eggs and kept me in the hospital for a few days to monitor me. Once the doctors were comfortable, I was released. My anxiety and nerves were definitely getting the best of me, even after I was released. Even though the doctors told me I was okay my mind kept tricking me into thinking that something wrong was going to happen with my heart.
Once I was back at home, I had to continue taking the blood thinner shot for about a week and was allowed to start my anxiety medication again. I was also able to begin therapy sessions, which started to help me emotionally. Since we were now passed the first hurdle, my husband and I started looking at agencies to help us find a gestational carrier. We choose to use an agency, as we were not comfortable looking for someone on our own and heard so many horror stories and “myths” of what could happen. There was a sense of security using an agency, we would have someone holding our hand through the process. Once we picked the agency, they sent us profiles of individuals who were willing to carry our child. It was kind of like using a dating site where we had to match profiles. Once matched, medically confirmed, and all contractual and legal documents were signed, the hospital sent over the carrier’s shots to prep her for the transfer. Based on our doctor’s advice, we chose to implant one embryo. Once the embryo was implanted it was a waiting game. We had to wait a week or so for a blood test to confirm pregnancy…. she was!!
The confirmation was huge for us, we were so elated with joy. But, then I started worrying if the baby would have a congenital heart defect. If yes, I would forever feel guilty, I wouldn’t want any child having to go through what I did when I was younger. Before we started, the doctors told us they didn’t think my congenital heart defect could be passed down, but of course, there was never a 100% guarantee. To be on the safe side they performed a fetal echocardiogram around 5 months, which confirmed there was no risk of any heart defect, and we felt a huge relief.
Through our carrier’s pregnancy, we stayed in constant contact and became very close. Although I had a good experience with my carrier, I wondered if the baby and I would have a connection since he/she barely heard my voice. I carried some guilt and sometimes still do. At some point, I would also have to explain to my child that I was not able to carry them. I was lucky enough, however, to have a carrier who was super open with us, included us on milestones, and even recorded heartbeats for us.
On August 25th, my baby boy was born. Due to the contract set up by the lawyers and agency, our baby boy was finally brought to us after he was delivered and cleaned up. The doctors did a full work-up. I even made my cardiologist do another exam, but everything was normal. The whole process was emotional, physically, and mentally draining, but worth every single minute. We had a beautiful baby boy, and it was the best feeling ever.
I knew I wanted another child right away so that the kids could have a connection at an early age. Since we had a wonderful experience with our carrier, we asked her if she would carry a second baby for us. We were so thrilled that she and her family said yes. Luckily, we had available embryos frozen, so I didn’t have to go through another cycle. After her body healed and was ready, we started the process again and had our second beautiful baby boy!
The IVF process and gestational carrier process felt long with numerous hurdles, challenges, and bumps hitting me in every direction. Sometimes I wondered if it was really going to happen and if I made the right choices. I am so grateful for all of my doctors’ help, the nurses, and a great support system. It is amazing how technology has evolved and how much we can do. Without all of this, I would not have the family that I dreamt of since I was a child.
Disha Modi is 38 years old, born with double outlet right ventricle. Formerly a preschool teacher, she is currently a stay-at-home mom to two beautiful boys. Disha lives in Whippany, New Jersey with her family.