Congenital Heart Disease: A Mother’s Fight for Life

Mar 5

A Story of Survival, Healing, and the Future of Maternal Health

By Teresa Krammer

My pregnancy started out relatively normal when I became pregnant in September 2021. By the 20-week anatomy scan, they found I had a single umbilical artery (SUA) when there should be two. My OB set up monthly ultrasounds to monitor my baby’s growth, since SUA can be associated with growth restriction. Fortunately, the baby continued to grow well, and was even ahead of size.

However, at around 28 weeks, during one of these scans, it was discovered there was an anomaly with my baby’s heart. This set off a series of appointments with Maternal Fetal Medicine (MFM) and eventually Pediatric Cardiology. Again, we were thankful to learn that the Congenital Heart Disease (CHD) was not severe, but my care team did begin to plan for an induction. The hope was to be able to have the appropriate care team on hand at delivery so that any complications with the baby’s CHD could be handled promptly.

We prepared ourselves for a NICU stay. While we were so scared of what this CHD could mean, we were grateful to be able to have the time to mentally prepare for the NICU. Although there were still COVID precautions in place, we were able to meet virtually with some of the NICU care team, which helped us feel confident that we would be in good hands.

“While we were so scared of what this … could mean, we were grateful to be able to have the time to mentally prepare for the NICU.”

Our May 31st due date neared. At my last MFM appointment, my blood pressure (BP) was high. They seemed a bit concerned and asked if it had been high before, and it hadn’t. I had my regular OB checkup in two days, so they asked that I check my BP and to rule out pre-eclampsia. They also suggested I go ahead and get my induction date set for between 38 and 39 weeks. My last OB appt went well, and while my BP was a bit high, it was lower than it had been at the MFM, and there were no signs of protein in my urine.

We checked into the hospital for our induction on a Friday night. After they hooked me up to the machines, I was shocked to find out that I was already having contractions 4-5minutes apart. Despite that, the first 24 hours of induction (Cervidil and Pitocin) were very unsuccessful, and I felt exhausted and frustrated. We got a new on-call OB who suggested we take a small break for dinner and a break before restarting induction. With the help of an epidural, labor finally started to progress. I fell asleep a little before 3 am, excited to know I would meet my baby soon.

I Distinctly Remember Thinking … This Doesn’t Seem to Be Going Well.

Not quite an hour later, I woke up with a splitting headache, and I knew something was wrong, so I paged the nurse. She didn’t seem particularly concerned, but then asked me to move around because she was having a hard time finding the baby’s heartbeat on the monitor. She called in another nurse, and very quickly, the room started to fill up with people. At this same time, I realized that while thinking clearly and understanding the conversation, I could not communicate with the nurses as they asked me questions. I threw up. The OB was rushed in and noted that my BP had dropped dramatically. I was able to follow directions as my OB came in and asked me to get on my hands and knee to try and help my BP pressure, but just a few moments later, I heard them ask to prep the OR.

“I could not communicate with the nurses as they asked me questions. I threw up.”

The following parts of the story are pieced together from what I remember and read later in my surgical report. From the time the C-Section was called for to when my son was delivered, it was six minutes. The NICU staff immediately began to work on my baby because he wasn’t doing well. I started to get the sense that things weren’t going well for me either, as I heard a lot of chatter in the OR about the state of my uterus.

Evidently, I started to hemorrhage. They kicked my husband out of the OR (my son had already been whisked away to the NICU without me having even seen him or heard him cry). As I lost consciousness, I distinctly remember thinking, “Well, this doesn’t seem to be going well.” I also had an odd sense of calm, as I was in the OB’s very capable hands. In fact, I had no idea how bad things were going.

Ultimately, I needed 41 units of blood product and a hysterectomy to save my life. I had gone into DIC as well, and stents were placed in my kidneys as a way to mitigate some of the short-term damage they sustained. After a 7-hour surgery, I was sent to the ICU, where they expected me to be intubated for 2-3 days as I recovered. Fortunately, I woke up on my own just a few hours later. A day and a half after that, I was moved out into a regular room and was discharged on May 31st, without my baby, after 10 total days in the hospital.

All of that happened, and I am still one of the lucky ones.

All of That Happened, and I Am Still One of the Lucky Ones.

Lucky that I get to be here.

Lucky that I get to watch my child grow up.

Lucky that I get to run again.

Lucky that the physical impacts were short-term and minimal (as far as I know).

Lucky that I had good insurance, adequate leave at work, and a loving support system at home.

Yet I will live with all the very real emotional and mental impacts forever. For the better part of 2.5 years, I only had the capacity to take care of myself and my child, and focus on healing. Now, I’m committed to finding ways to help. I’m still working out the specifics of what my advocacy looks like, but things are finally starting to take shape. The hard first step of sharing is done. Only forward from here.

“Now, I’m committed to finding ways to help…the hard first step of sharing is done.”

As an advocate, what I do know is that the U.S. maternal mortality rates are the worst of any other developed country, with Black and Native people experiencing even higher inequities. In some places, like Texas, reproductive rights are being stripped away, and rural areas are becoming maternal healthcare deserts, further contributing to poor maternal outcomes. Did you know that the Texas Maternal Mortality and Morbidity Review Committee isn’t even reviewing cases from 2022 and 2023? That means my case doesn’t get reviewed, nor does any case from those who suffered complications or death from lack of access to abortion care under the Dobbs decision.

For every maternal death in the U.S., tens of thousands of others suffer a myriad of long-term physical and mental impacts, not to mention financial, social, and so on. We must keep this conversation going for those reasons and so many others.

Straight-Up Advice: Talk to Your Doctors

**Teresa Krammer’s** picture-perfect pregnancy started out “relatively normal.” But a scan at 28 weeks discovered an anomaly with her baby’s heart. That’s when their lives changed and open discussions with their medical team began.

Don’t Be Afraid to Ask!

Suppose you have concerns about Congenital Heart Disease (CHD) during your pregnancy or after the birth of your child. In that case, it’s essential to have a comprehensive discussion with your healthcare provider. Here are some potential questions to ask to give you a better understanding of your options and to take appropriate steps:

During Pregnancy:

What are the risks of Congenital Heart Disease (CHD) for my baby?
Are there prenatal tests that can detect CHD?
How can I reduce the risk of CHD during pregnancy?
Are there any signs or symptoms of CHD I should watch for during pregnancy?
Should I be referred to a specialist for further monitoring?

After Birth:

What symptoms should I look for in my newborn that may indicate CHD?
How is CHD diagnosed in newborns?
What test will be done if CHD is suspected?
If my baby has CHD, what are the treatment options, and will my baby need follow-up care?
What is the long-term outlook with babies with CHD?
Is genetic counseling necessary?
Are there support groups or resources available for families dealing with CHD?