The reality of motherhood with a medical condition - a ticking mom

Ever since a very young age, I was adamant about becoming a mother, having a little person (preferably a mini-me), who I could love and take care of, play with and guide to adulthood. My heart defect never featured in my dreams as an obstacle. When I had to have a heart valve replaced at the age of 13, I was allowed to choose between a donor or an artificial valve. I opted for the artificial valve because of its long(er) lifespan compared to a donor valve, but I only wanted it if it meant that I could still get pregnant. My cardiologist explained that a pregnancy would still be possible provided I switched my anticoagulant during pregnancy.

A mechanical heart valve breaks down the platelets, which can then form clots if nothing is done about it. To prevent this from happening, I have to take anticoagulants. Oral anticoagulants are strongly discouraged during the first trimester and the last weeks of pregnancy. Oral anticoagulants are at that point replaced by anticoagulants administered through injections. 

I was close to 33 years old, when I met my husband Jelle. He already had 2 sons from a previous relationship, and I still had a desire to have children. One year into our relationship, I had to go to the cardiologist for my (then) biennial check-up. Jelle went along because we wanted to inquire about having children. The cardiologist had good news for us: my heart and valves were stable, and each good ultrasound gave me a green light for the span of a year. He told me to call him once I had conceived to adjust my anticoagulant treatment.

Jelle and I talked a lot about a child of our own: About what it would entail, who would take on which care tasks, how would I cope with my already reduced energy level, and most importantly: would my heart be able to deal with a pregnancy? My heart defect is not hereditary, which gave us a less than 5% chance of having a child with a heart defect. Jelle was quite tense about it – about my heart condition and caring for a baby. However, he saw that things could work out really well in the long run in the case of friends of mine, who also suffer from a heart defect, and still have a family. They gave Jelle (and me) the confidence to try for a baby. 

A little over a year after my visit to the cardiologist, I was finally pregnant! We were overjoyed, but unfortunately our delight was short-lived. The pregnancy ended in a miscarriage. Given my anticoagulation treatment, the doctors recommended that I should undergo a curettage.

The information we received from the cardiologist before our first pregnancy had been brief, and in the pregnancy, we were faced with several surprises. After my first pregnancy, I switched over to another hospital. At the new hospital, there were cardiologists who look after and treat pregnant women. Before a possible new pregnancy, we addressed the issue with my new cardiologist, a specialist who works with pregnant women. This time, we discussed the risks in detail. There was no risk of my heart’s pumping function failing or that my donor valve would be adversely affected by a pregnancy (I have both a donor valve and a mechanical valve). The biggest risk that presented itself was a mechanical valve thrombosis, but I fell within the most favorable scenario in this respect, and even if it would occur, we could expect good results for mother and child with the treatment.  

A few months later, we welcomed another positive pregnancy test. I was very much on edge during the first trimester: would this baby survive? Yet one prenatal ultrasound after another was positive, and confidence and joy began to prevail. We were really going to be mom and dad this time. I didn’t need another check-up with the cardiologist until the beginning of the second trimester. I felt good and didn’t worry too much. In fact, I had never been really concerned about seeing my cardiologist until then. 

But there was cause for major concerns. The cardiologist suspected a mechanical valve thrombosis. The rug was pull out from under my feet: I was not allowed to go home and had to stay close to doctors. After several examinations, I did indeed appear to have a mechanical valve thrombosis, and the anticoagulation treatment via a drip started. Over the course of the following days, my values worsened, and I had to undergo treatment with a “clot buster” (actilyse/alteplase). The doctors could not exclude that my placenta would begin to bleed. I spent many anxious days in hospital and requested numerous ultrasound examinations for the baby. Watching my baby wriggle on the ultrasound screen gave me the strength to keep going. Due to my thrombosis treatments, I suffered an additional bleeding, which caused me a lot of pain and resulted in nerve damage in my left leg.  

Suddenly my heart defect and motherhood were no longer my biggest concern, but rather how I would manage with a malfunctioning leg? At the hospital, I received physiotherapy and once I was discharged, I was able to take a few steps with a rolling walker. After living with my mother for a few months (we moved my bed into the living room as my mother was working at home), I was strong enough to go home. 

A few wonderful weeks followed and then suddenly the delivery occurred a bit prematurely. My water broke at 35 weeks and 4 days, the contractions started and a day later our son Joah was born by an emergency cesarean section under general anesthesia. I had to undergo my cesarean section under an anesthetic because I had not yet transitioned to the appropriate intravenous anticoagulation treatment. Vaginal delivery was not an option because our son still had anticoagulants in him, and the pressure of the birth canal could cause serious bleeding.

Four weeks of hospitalization, one cesarean section, two infections, three bleedings and three recovery operations later, we were allowed to go home. Joah had already been discharged from the hospital and stayed with me in the room for the last week. I was incredibly weak, and we had to rely on a lot of helplines and support groups. I couldn’t take care of Joah myself. This was a cause of bitter tears for me. I had worked so hard with my physiotherapist to become as independently as possible and now I was back to moving about with my rolling walker. My low hemoglobin levels caused me to feel very weak.

We had a someone that helped us at home (paid informal care through health insurance), a domestic help (merely temporarily help, only available for a certain period, in connection with Jelle’s post-Covid condition), friends of mine came to help after I was back home, and my mother helped and still helps a lot. Step by step, I got back on my feet again and took on more and more care responsibilities.

At the time of this post, Joah is 11 months old. He can pull himself up, walk by supporting himself on furniture, crawl. He’s a cheerful, enterprising, active chap, who thinks that life is one big party! I never anticipated my heart defect to play such a major role in my pregnancy. A visit to the cardiologist will never be carefree again. And every day with my son is a celebration. 

In everyday life, I notice that my heart defect makes me tire faster than before. Everything I do costs me just a little more energy. As a result, I use a mobility scooter or a push wheelchair for long periods of standing or for a day out, and I use an e-bike instead of a regular bicycle. I have been completely rejected by the UWV (Dutch Employed Person’s Insurance Administration Agency). 

I have not had any unpleasant reactions to our desire to have children and to my pregnancy. I think everyone had the thought at some point, including myself: ‘Why are we putting ourselves through this again?’ So much tension, so many complications. Most of all, we and our loved ones are particularly glad that both me and Joah are alive.  

In our conversations before the pregnancy, I told Jelle that I would appreciate it if he could do the morning shifts so that I could get my rest. But in fact, I now get up almost every day with Joah and do most of the care tasks. Jelle has gone back to work and is not always around during the day. When I am occasionally very tired or have slept badly, I ask Jelle if he can get up early so that I catch some more rest. For me, this has not so much to do with my heart condition, we are both parents, who can take care of the work that needs to be done. We are looking after Joah and after each other.

All of Jelle’s doubts and concerns have vanished now that he sees how well Joah and I are coping. At some stage in the future, I will have to undergo surgery to replace my donor valve. We’ll see how it goes then. We’ve been through so much in the past two years, we will be able to cross that bridge together when we get there.