Today's medical technology is amazing. We found out that one of our twins had a heart defect at our 16 week ultrasound. And at 25 weeks, we were able to find out exactly what type of defect it is.
It's a very difficult thing to find out that your baby will be born with a heart defect. Obviously, you want your unborn child to have a fair start in the world. There's a lot of guilt that comes with that. Just know that it is not your fault he has a heart defect. One of my OBs told me it's incredible what the fetus goes through to become a tiny person, and the fact that there aren't more defects is mind-blowing. But here you are and there's a brand new little person coming in to the world, heart defect and all.
Here are a few tips on getting ready for your heart baby:
You don't need to tell everyone
This is a very personal matter, and who you tell is completely up to you. If you want to put it out there on social media and let everyone know, that is your decision. I personally thought of this as a need-to-know situation. My close family, my closer friends, and work folks were first on my list. I had a lot of prenatal appointments, and there were going to be surgeries in our family's future so transparency was key at work. As far as my not-so-close friends, I felt uncomfortable bringing the subject up. "Hey guess what's wrong with my baby!" felt very awkward and self-pitying. Now that we are through his Glenn surgery and approaching 6 months of age, I am comfortable talking about it with everyone. But at first, especially with all the pregnancy and postpartum hormones, I kept it very close to the vest.
Finding out about the heart defect completely killed my excitement. I was no longer 100% stoked for babies - I was sad and anxious and worried. I felt guilty all the time and put the nesting phase on hold while I dealt with my feelings. This caused a pretty ugly spiral. After a few weeks of crying and sleeping too much, I realized I need to get out of this funk. My babies don't know they're different, so it's important to stop wallowing and start being excited again. Nesting helped tremendously with that. Getting their room ready was fun and heart-warming. After their room was finished, I looked around and for the first time in a month, I felt excited and happy again.
Join a Facebook group
There are a lot of resources out there for CHD families. There are support groups and events you can attend - but that is not really my style. Our single-ventricle nurses offered names and numbers of parents going through the same thing, but that felt just as awkward as a support group. I am a bit introverted and do better with online resources in general, so I immediately looked up a Tricuspid Atresia group on Facebook. This was perfect! I was able to ask questions, read others' questions, and read some inspiring stories of TA/CHD warriors themselves. This gave me a ton of hope that my baby will not be that different and will be able to lead a normal lifestyle. It also gave me some great tips on surgery recovery, how to handle twins (one being heart-healthy), feeding, and more. Being in a Facebook group allowed me to set my own pace of involvement in the CHD community.
There's some extra medical equipment and medications that will be a part of your household now. Setting up "stations" was important before we brought the nuggets home. We needed a place for his scale, his pulse/ox machine, a tablet to log his daily info, and an area for his medications and syringes (without needles, for squirting meds in his mouth). We ended up getting an extra changing table which was the perfect size for his scale. Plus we put the pulse/ox machine and attachments on the lower shelves. In our kitchen we had a little cup for all his syringes, had his medicine bottles neatly lined up, and the instructions taped to the wall behind it all. Now he's only on daily aspirin so instead of syringes and medicine bottles, we have a pill cutter and crusher. Getting these stations/zones ready was another step in accepting our new normal.
A lot of new parents do test runs to the hospital. How fast can we make it? Which route is better? We did this too! But we also added another stop. I was going to be giving birth at a different hospital than where our heart baby would be staying for the first few weeks. So my husband and I went from home to Good Samaritan hospital, then to Cincinnati Children's, then back to Good Sam. My husband did a lot of back-and-forth trips to the two hospitals after the birth so finding a quick route during various times of day was very helpful. Also be sure to check out the valet parking situation at the hospitals, that came in handy a few times!
At the end of the day, you're going to be stronger than you ever thought possible, and this little baby is going to be everything you hoped for. You're going to have a different "normal" than others, but it's not going to feel any different to you and your family. Good luck moms & dads, you got this!