A Patient’s Perspective

Tiffany’s Story

As someone born with a bicuspid aortic valve (BAV), critical aortic stenosis, dilated aorta and a patent ductus arteriosus (PDA) I was always told that when I wanted to consider pregnancy it would be a long thought out process to determine if it would even be possible. Growing up I always wondered if I would live to get married, let alone have a family, so when it came to that point in my life I knew I needed to be as prepared as possible.

When I married my husband I was also working in cardiology with the adult congenital clinic as a medical assistant so I knew there were many things to consider and to know when discussing CHD and pregnancy and I’m sure all cardiologists will agree. There are various areas of information I feel are important for adults with CHD to consider and it is also important for parents of children with CHD to be aware of.

The first is that every situation and person is different when considering pregnancy. Obviously with women there are a lot more factors to consider. However, men with CHD also have an obligation to be educated before starting a family. With men it is just as important for you to know where you are at with your health prior to starting a family. This will allow you to know if you are in the best place, health wise, to raise that family and also to know your chances of passing your CHD on to your child.

If you are a woman with CHD, like I am, and are considering pregnancy at some point, I strongly encourage you to be responsible for your health. This can be done by ensuring you are in the best shape possible prior to considering pregnancy. This is also done by maintaining proper follow up with your adult congenital cardiologist. If you do not have an adult congenital cardiologist; depending on your CHD, it may be imperative that you be evaluated by one prior to considering pregnancy. General adult cardiologists are very knowledgeable but not as knowledgeable in the field of congenital heart defects as adult congenital cardiologists, especially when it comes to pregnancy. It is very important that you talk openly and realistically with your adult congenital cardiologist about pregnancy and truly consider all the potential risks to your health and the baby’s health prior to trying to conceive. In addition to consulting with your adult congenital cardiologist it is also important to discuss the potential need to meet with a high risk OB prior to conception.

Once you have conceived your OB and cardiologist should be notified immediately so they can make any adjustments to medications that may have not been done already and plan for close follow up. Open communication and frequent follow up are important depending on the severity of your CHD. Your providers will be able to determine how closely you need to be monitored. It is also important to have a clear plan in place for delivery early on in the pregnancy. This is especially important when the plan may have to change last minute due to unforeseen circumstances. By knowing what was being planned and why, the providers will know how best to make adjustments if things come up unexpectedly.

When my husband and I were finally given clearance to try for a baby I was monitored very closely. My team laid out a very clear plan prior to conception and again after conception which helped me tremendously.  My husband and I are blessed to have two healthy, rambunctious boys.

With both of my pregnancies, my health care team was very hands on every step of the way to make sure we did everything possible to get my babies and me to this point. I feel things went fairly smoothly overall for my first pregnancy until delivery. I did have various complications throughout my second pregnancy. Most of these complications were not cardiac related but my cardiac history compounded every complication which made management difficult at times.

I was able to carry to around 32 weeks gestation with both of my boys at which point I was required to deliver due to non-cardiac related pregnancy complications that arose. With my youngest son these complications happened on a holiday weekend while most of my healthcare team was out of the office. Since my team had a clear plan in place and documented in my chart the doctors that were on-call when the complications arose were able to follow the plan laid out. Our sons are both safe and healthy and I am back to my cardiac baseline. I have no doubt this outcome is due to the combination of close monitoring and knowledge of my healthcare team as well as my ability to advocate for myself and knowing my healthcare needs.

Making the decision to have your own child is not one that should be taken lightly when you are born with a congenital heart defect(s). Whether it is your first pregnancy or you are weighing the risk for additional pregnancies; it is important to remember no two pregnancies are the same. Although I don’t want to diminish how difficult of a decision it is; because I know firsthand, there are many ways to become a parent even if you are not able to carry the baby yourself.