My daughter, Sophia, will be four in April. She was born in 2017. I really didn’t have any huge concerns going in. It was just very exciting. But of course, I wanted to be very careful and make sure that we were taking proper precautions as needed. And my OB-GYN was wonderful; he wanted to do extra ultrasounds. My cardiologist in Missouri actually wasn’t as involved in that pregnancy. But I was very confident with my OB-GYN. He said, continue taking your beta blocker all the way through.

Sophia was always on the smaller side growth-wise. Then I went in for my appointment at 37 weeks, and I had an ultrasound that day. And she hadn’t grown since the last, and the amniotic fluid was really low. And her heart rate was pretty low. And the blood flow in the umbilical cord was low.

My OB-GYN said, it’s just time for her to be born. He recommended an emergency C-section. It’s kind of funny, I went in for a routine appointment at nine that morning and then had a baby at 1:17 that afternoon.

Sofia’s blood sugar was on the low side. So she went to the NICU for that. A few days after she was born, they wanted to transfer her to St. Louis Children’s Hospital so that she could be seen by a pediatric electrophysiologist. She saw Dr. Aarti Dalal (I loved her).

We got to St. Louis Children’s Hospital on a Friday. They ordered her genetic testing, but then we didn’t get the results back until a couple of days later. They recommended we go ahead and get her started on beta blockers. And so when she was six days old, she started on propranolol. I’m actually really thankful that she started early because she just has always been used to taking it. She’s just always been used to taking a little bit of medicine every day.

She’s been a very healthy, very active girl. And we’ve never had any big concerns with her. I’m really thankful for my OB-GYN and the fact that he just wanted to be very watchful. Because I think if he hadn’t been ordering all those extra ultrasounds, we wouldn’t have been tracking everything so closely.

When I had my son, I was seeing a different OB-GYN, and she still wanted to do the extra ultrasounds. I also had a new cardiologist. And when I told him I was pregnant, he told me I should stop taking my beta blockers during pregnancy. And that just didn’t sit right with me. So I went and got a second opinion from another doctor and he was like, you should absolutely keep taking your beta blockers. It’s especially important in that postpartum time. So I was really glad that I had gotten that second opinion.

Besides that, my pregnancy with my son was pretty easy. I didn’t have bad morning sickness. He was a scheduled C-section. He doesn’t have Long QT syndrome. But he was born with an extra finger and toe on each end and each foot, so he had six fingers on each hand and six toes on each foot. Everybody has something that they’re dealing with. Sophia has Long QT syndrome. Henry has these little extra digits.

Everybody has imperfections, but it’s those things that make us unique, and help us have such powerful stories.

What was the most challenging aspect of being pregnant with a SADS condition?

I had morning sickness all the way through. The first trimester, I made it through without nausea medication. And then the second trimester rolled around, and I was like, I can’t do this anymore. The nurse called and she said, Okay, there are three options for anti-nausea medication. So I pulled up my Credible Meds app. And I looked and it was one of them was Zofran. And I was like, well, that’s no, and then I forget what the other one was, but it was also a no, and then finally, the third one worked.

What advice would you give to someone who’s pregnant and has a SADS condition?

I think one of my big pieces of advice is if you feel like you need a second opinion, absolutely get one, because you are your best advocate. And if anything just sounds off to you, be sure to go get a second opinion. The other piece of advice would be to, especially postpartum, practice self-care. I think it’s very easy to kind of get lost in taking care of the baby, but we also need to take care of ourselves, as every mom does, but I think especially when you’re at high risk postpartum, it’s especially important. For me, that meant slowing down from a lot of things and stepping back from a few things that I was doing during that time until I felt like I was ready to pick things back up again.

How has the SADS Foundation been helpful to you?

My mom connected with the SADS Foundation when I was a kid. For a few years, Dr. Vincent was our doctor. We’re just really grateful for the SADS Foundation for being a resource for support for us, and for knowledge. We’ve also been to a couple of the conferences, we went to the one in Chicago, and that was really neat. We helped with the youth and teen events. It was amazing just to meet other kids, other teenagers who had this condition. Because I think it can be very isolating, because a lot of people haven’t heard of it.