Becoming a heart mom: Pregnancy edition
September 10, 2021, the day I became a heart mom, 25 weeks into my pregnancy, is etched in my brain forever. “There’s something not quite right with your baby’s heart” are words no mom-to-be is prepared to hear.
No time is a good time to find out your baby has a heart defect. There are some benefits to earlier discovery, but then there are additional emotional challenges.
Finding out my baby had a huge hole in her heart that could only be repaired through open heart surgery changed my pregnancy. In the post, I’m going over how I found out, how I processed it all, and how this changed my pregnancy.
Diagnosis by fetal echocardiogram
I was sent for a fetal echocardiogram as a follow-up to my standard mid-point anatomy scan. This was the day my life changed forever. The maternal-fetal medicine obstetrician diagnosed a suspected AV canal defect. He said with the advanced modern technology and at 25 weeks gestation, the defect was clear. However, he wanted to discuss specific details and measurements with a pediatric cardiologist.
After a second fetal echocardiogram with a pediatric cardiologist present, our baby’s AV canal defect diagnosis was concrete.
Denial. Anger. Bargaining. Depression. Acceptance.
Within only a few days we were unexpectedly thrust into this new world. We flew through the stages of grief. Looping up and down, around and around a few times. But we had arrived. There was no denying the defect and there was no way to change it. The only thing we could do was accept it, learn, and prepare.
Despite the shock and difficulty, we became thankful for the prenatal diagnosis. Knowing in advance helps improve the care of babies with congenital heart defects.
Welcome to the heart mom club
Google can be your best friend or your worst enemy. For most medical things, they warn you not to go down a Google rabbit hole. But having that much self-control is really difficult! Once our baby’s AV canal defect diagnosis was confirmed, we poured ourselves into learning everything we could about it.
I found my saving grace in various Facebook groups. Both generally for families of children with congenital heart defects, and a couple with parents of those with AV canal defects specifically.
Connecting with other heart moms and parents on the same rocky road is so helpful. While support from family and friends is amazing and essential, it’s still not the same as having some support and guidance from people who have been through these experiences first-hand.
Hearing “I know exactly how you feel” and “I worried about this during my pregnancy as well.” and “My baby was diagnosed around the same time in utero” made me feel not so alone as a new heart mom.
These groups have already proved themselves invaluable for me. I recommend all new heart moms find similar groups to join. From emotional support to technical information, to surgeon and hospital information to helping prepare and setting realistic expectations, these groups provide so much comfort and value.
A new direction, a heart mom pregnancy
Once the AV canal defect diagnosis was confirmed, my pregnancy took a turn. I suddenly went from an uncomplicated low-risk pregnancy to a high-risk pregnancy carrying a medically complex baby.
Thankfully I’ve been able to continue seeing my midwives, which is my preference. But on top of this regular care, I have also needed to see maternal-fetal medicine (MFM) high-risk OBs, a pediatric cardiologist, extra ultrasounds, fetal echos, and non-stress tests (NSTs). I’ve had more appointments with this one pregnancy than my previous two combined.
Preparing for this baby took on an entirely new direction. Instead of thinking about getting to buy girl clothes this time, and what we forgot about newborn life, our energies had to shift. Now instead, we had to research surgeons and hospitals. Is the NICU at my planned delivery hospital high enough level? Figure out what we needed to learn and prepare. Meeting with surgeons and cardiologists. Knowing the signs of heart failure.
Does knowing a CHD diagnosis in advance help?
We are thankful to have found out about her heart defect early, during pregnancy. This allowed us time to process the shocking news, learn about the defect, and make plans for her care. Early awareness and intervention with CHDs can make a big difference.
However, early diagnosis can only take you so far. The extra stress and worry can be paralyzing. And there’s only so much you can do during pregnancy.
I would still want to know in advance, but receiving a prenatal CHD diagnosis makes you feel a bit powerless. Nothing you do will affect or change the diagnosis.
So many times, I’ve heard from others to try to enjoy the rest of my pregnancy. I understand this in theory, but in reality, it’s been tough to do. This is the easier time. Mentally and emotionally it’s difficult, but still, the baby is safer in utero for now where my body does more work for her.
There’s no way to know definitively how she will do once she’s born and trying to breathe, eat, and regulate on her own. When she’s here, it will likely be more stressful and tumultuous. But not stressing is much easier said than done.
Never mind the fact that we’re still in a global pandemic. This certainly doesn’t help matters either.
A heart mom’s pregnancy grief and hope
A heart mom’s pregnancy is unlike any other. The excitement and joy are stamped out with worry and stress. Even if your baby’s congenital heart defect has a great rate of repair, the issues that could present are significant and troubling. Having to ask about multiple surgeries, pacemakers, ECMO (life support), and mortality rates is sobering.
Though, modern medicine, science, technology, and doctors are amazing. Such strides have been made with congenital heart defects. So thankfully there is much more hope than a few decades ago.
For a new pregnant heart mom, the worry is still there, but luckily the light is a lot stronger.
