Expecting a Rainbow Baby: Pregnancy After CHD
CCHD is fortunate to have Jen DeBouver share her experience and advice on pregnancy after CHD. She is currently expecting Nina Delilah, her rainbow baby, a child born after a miscarriage, stillbirth, or child loss, this August.
It came as a total surprise. Pregnant after 3 ½ years since losing my son Asher to CHD. So many emotions started pouring through me – excitement, happiness, fear, anxiety, complete worry. Unfortunately, I have been through two separate big losses. My daughter Olivia was stillborn from what we believe may have been a blood clot due to not knowing I have MTHFR, a gene mutation, in November 2011. 11 months later, my son Asher lost his battle to CHD after developing blood clots. He was 6 weeks old.
As soon as I found out I was pregnant, I called my doctor’s office. I needed to know what the plan was for this pregnancy. How were we going to prevent another loss? Did the baby have CHD? I wanted to make sure I did everything in my power to make sure this baby was as healthy as could be. Since doctors in the past told me Asher’s heart defect developed before I even knew I was pregnant, I knew the first trimester was the most critical. As moms affected by CHD, we can make ourselves go crazy thinking if we had only eaten this, or done that, then maybe this wouldn’t have happened.
I am very fortunate in this pregnancy to have exceptional care. I have an OB that completely understands my situation and has told me that it is OK to request extra ultrasounds and call him with any worries, no matter what time of day it is. Having a considerate doctor like mine is very important when you have such a terrifying pregnancy. I have an ultrasound every month with either my OB or my high risk doctor, and if there isn’t one, I schedule one for the piece of mind that my baby is doing all right.
With this pregnancy, I have two fears. Will Nina have a healthy heart? Will she live till birth and thereafter? I had my 20 week full anatomy scan recently, and was a complete wreck leading up to that appointment. At first, I compared Nina to her sister and was convinced she would be stillborn before we even made it to the appointment. Then, I cried the entire drive on the day of the appointment because I was so worried that we would find out she had CHD. On top of this, I was also nervous about the doctor and staff since it was the first time meeting my maternal-fetal medicine doctor. Thankfully, from the start, the nurse was nice and the ultrasound tech was amazing. She went over everything during the scan and told us exactly what she was looking at and the outcome. She checked for all of Asher’s heart defects and let us know our baby girl’s heart was healthy!
After our scan we met with the doctor who was happy to tell us we were having a normal, healthy daughter. We have an echocardiogram scheduled soon just to look more in detail at her heart, but the doctor told us this was more for our reassurance and that they didn’t expect to find anything. Being in the CHD world, I know anything can happen between now and then, so there are still those worries that something could still show up, but they aren’t as strong as before. The worries with her being healthy will continue until she is in my arms, and probably long after.
Jen Shares Encouraging Advice on Going Through a Pregnancy after CHD
Find an OB that understands your fears.
Find a doctor that is understanding to your situation. If not, it will only cause undue stress. There are always other doctors, research and find one that you are comfortable with.
If you feel you need it, request additional ultrasounds, echocardiograms, or tests.
Talk to your doctor about additional tests that will give you peace of mind.
See a counselor to discuss your fears.
Counselors can be very beneficial in listening and helping you work through erratic thoughts, worries or stress. They can develop a plan to help you find peace and calmness.
A high risk pregnancy comes with a lot of worry and stress, neither are good for you or the baby. Find ways to practice self-care, such as yoga, meditation, and even relaxing baths, to help reduce any stress.
Have a good support system.
Having people that will listen can make a big difference. Talk to your support system about your pregnancy concerns, worries, or thoughts. This can be family, friends, or a support group. Rely on these people for support throughout your pregnancy.
Jen, a huge advocate in helping those that have lost children, started her own foundation, Asher James Foundation, after losing her son to CHD and blood clots. She is the Bereavement Coordinator for Mended Little Hearts National and Chicago. Jen works as a Management Services Specialist for the Department of Labor and has a Bachelor’s in Sales & Marketing and a Master’s in Human Resource Management. She also served 4 years in the U.S. Army, and met her husband while stationed in South Korea. Jen is also involved in Native Veterans of Illinois. You can follow her journey of expecting Nina Delilah, her rainbow baby, this August on her blog, A Rainbow After All.