Congenital Heart Defects
Wild at heart.
From personal experience, I learned that having a baby with a congenital heart condition (in our case, Hypoplastic Left Heart Syndrome) was no indicator of weakness. In fact, we named our little girl Audrey, meaning “noble strength”. She was a fighter! And the families I have met that similarly have either delivered or lost a baby with a congenital heart condition feel the same. No matter how much of a heart their baby has, these kids are FULL OF HEART, and worth loving with all of ours.
Did you know?
Congenital heart defects (CHD) are the most common type of birth defect in the US, according to the CDC, affecting 1% of annual births. This is 40,000 beloved kiddos per year. It is so critical to have support in learning more about a given condition and knowing your outcomes, because these babies have the chance to defy odds, receive corrective surgery and live fully-functioning lives.
Your medical team:
Maternal Fetal Medicine specialist (MFM), working closely with your OB and caring for Mom’s best outcomes pre- and post-delivery
Geneticist, caring for family
Pediatric Cardiologist, caring for baby
Cardiac Surgeon(s), caring for baby
Neonatologist, caring for baby’s best outcomes pre- and post-delivery
You will meet with your care team more frequently than the typical visit schedule of a pregnancy. This is to equip you, and monitor the baby, as the pregnancy progresses. Ask your OB & MFM what to expect throughout the course of this pregnancy.
The team of pediatric specialists will ensure your baby has the best possible care and birth plan, which often means planned delivery at a specialty hospital in the region that is equipped to care for your child immediately after birth. (Note: Ask your OB and Pediatric Cardiologist what to expect in a birth plan around 20-24 weeks.)
When and how to screen for CHD:
First trimester screening options are the non-invasive prenatal testing (NIPT) at 9 weeks, and nuchal translucency (NT) scan at 12-13 weeks. If either of these indicate risk of a congenital heart defect, you will do an initial fetal heart screening, and be seen for a fetal echo - typically in your 2nd trimester.
If certain pre-existing conditions exist, your OB may similarly recommend a fetal echo in the late 1st trimester or 2nd trimester (see below).
The fetal echocardiogram:
If your initial fetal heart screen / sonogram or other factors have you being seen for a fetal echocardiogram, you will most likely have this done between 18-22 weeks when structures are developed enough to be well visualized. You can find an easy-to-understand list of indications for fetal echo here. (Note: Some practices are able to perform fetal echos in the late first trimester as well, so you may be seen earlier.)
The echo will be about 1hr long and will check for four chambers and blood flow using more advanced sono features (like color and more). This is typically done by a team specifically trained to screen for pediatric cardiology conditions at a pediatric care facility.
Follow-up visits:
Frequency and necessity of follow-ups will be recommended by your care team outlined above. You will likely be seen every 1-3 weeks to monitor baby’s heart rate, growth and more. Do you want to be seen more often? ASK! Your doctors are there to support you and your family.
Appointments will be full of emotion, new information and, most likely, overwhelm. Your care team is equipping you with information on what your baby’s life will look like postpartum should they survive the pregnancy, and what medical attention or surgery may be needed for your infant after delivery.
Each family’s story is unique, and no road with CHD is easy. The common thread for families going through a high risk pregnancy affected by CHD is that your baby is worth fighting for, as they continue living with each powerful heartbeat in the womb.
Recommendations:
Take time to honor or bond with your baby throughout the pregnancy, even when the odds feel so slim and it takes just enough energy to get through each second, minute, day. Examples may be:
Journaling events or thoughts of the day
Saying their name or choosing a name
Gratitude journal
Giving thanks for this baby
Getting coffee with your spouse to just be together in the trial
Speaking about your child with someone who is there for you
Ask your doctor ALL the questions - take the time you need in that room, don’t feel rushed out! Rely on your spouse to write down questions to remember what you did want to ask, and to write down answers to process on your own after the appointment. Questions could include:
What appointments will I have and when? Can I get a likely visit summary written down for the next few weeks, or rest of, the pregnancy?
What testing options are there? What are they used for? Do I need them? What are the benefits for me in getting them?
What will the quality of life be for my baby?
I would like as much time as possible to process any decisions that have to be made. What are the decisions I need to be making in the next 1-2 weeks? By the time of delivery?
Are there specific facilities here in the area, or elsewhere, where they are specifically trained to manage this particular heart condition?
Can I call you if I have more questions? How do I reach you specifically?
What are good resources to go to on my own time?
Do you have a good counselor or therapist you would recommend that is specifically experienced in supporting families through high risk pregnancy?
We would love to support you in your pregnancy affected by a congenital heart defect. Reach out if you’d like our team to come alongside you in this time!
Resources:
UpToDate: Congenital heart disease: Prenatal screening, diagnosis, and management
