how i got this baby

The Mom Whose Daughter Just Happens to Have a Hole in Her Heart

Because no two paths to parenthood look the same, the Cut’s How I Got This Baby invites parents to share their stories. Want to share yours? Email and tell us a bit about how you became a parent.

Photo: H. Armstrong Roberts/ClassicStock/Getty Images

Going in, Dana felt very laid-back about getting pregnant. She and her husband were married for two years before they started trying, and they’d just moved to a bigger home, when they felt like the timing was as perfect as possible. But after Dana’s first pregnancy ended in an early miscarriage, her attitude toward conceiving started to shift from low-stress to high-stress. And once she was pregnant again, she and her husband encountered a whole new set of worries. Dana discusses the complexity of early pregnancy loss, being transferred to a high-risk team, receiving conflicting medical advice, and the months her daughter spent in the NICU.

On a low-stress attitude toward starting a family. Before I got married, I knew I wanted kids, but in a more abstract way. It didn’t become real until my friends started having kids. My husband and I were married for about two years before we started thinking, concretely, about trying to get pregnant. We lived in a small condo then, so we had to think about moving, finding more space. By the time we moved to a place with a bit more space, we were the last of our friends to start families, but we were in a place where we could do it, logistically, a little bit better. The conversation turned to, why not? Now’s as good as ever.

For us, trying was pretty straightforward: I just stopped taking birth control and let nature take its course. It was very low-stress, at first.

On the aftereffects of pregnancy loss. About six months after I stopped taking birth control, I got pregnant. I’d taken an at-home test and confirmed it — my ob-gyn’s office said they’d see me once I was eight weeks along. But about two weeks before that first appointment, I started bleeding pretty heavily. I went and got an ultrasound and that was that: It was very early, and it wasn’t a huge deal, physically. It just kind of wasn’t anymore.

Emotionally, the experience was complex: When I had the ultrasound, the doctors weren’t 100 percent sure, actually, if it was a very early pregnancy with some spotting, or a miscarriage. We had to wait the whole weekend for them to figure it out — my hormone levels had to be checked again after a few days. I kept thinking, What’s happening? Is this pregnancy over? Once we knew, I was terribly disappointed, but it was early enough for me that I didn’t view it as the loss of a child — it was the loss of a pregnancy, a missed opportunity. It was sad, but something I could get through. It was what it was.

What it did do, though, was make everything after that more anxiety-ridden. I’d been very laid-back about trying to get pregnant before, but now I was feeling much more determined and hell-bent on trying to get pregnant. We waited about three months, then started trying again. I went to an extreme of charting daily, planning for the exact right time. I made it much more of a chore than it had been — I wanted to get it right.

On a shift in attitude. To me, it felt like every month was loaded and really mattered. Before, I’d never felt like that. Trying to get pregnant suddenly felt very heavy. I was so focused on the data — taking my temperature every day, all that nonsense — and patterns. It took the enjoyment out of it.

We went on like this for a year, without getting pregnant. I was starting to get pretty stressed out. At my yearly exam with my ob-gyn — who’s wonderful, as much like a therapist as she is a physical doctor — I had a little breakdown in her office. I was convinced something was wrong, and I was infertile. She said very frankly that I might be stressing myself out too much and could quit tracking and just rediscover the joy of being intimate. Two months later, I was pregnant.

On feeling cautiously good. Getting pregnant felt emotionally fraught. It was good, but cautiously good. I took the home test as soon as I could and went immediately to the lab to get a blood-test confirmation. Because I’d miscarried before, they wanted to monitor my hormone levels, to make sure they were increasing the way they should. Right from the beginning, it was kind of anxious, and that set the course for the whole experience. I wanted to enjoy the news, but I had a hard time doing it. I was just so scared it wasn’t going to keep.

Once we passed through the first 12 weeks, the anxiety let up a bit. But then we found out about a whole new set of things to worry about.

On an isolating time during her pregnancy. At about 16 weeks, I went in for a regular appointment. When she couldn’t get a strong heartbeat, my OB wasn’t really worried, but I was — and in reviewing the ultrasound she realized the measurements weren’t matching up with the dates correctly. So she called me back in to check measurements and determined the fetus had about a two-week growth lag. We got referred to a high-risk team.

Our first visit was really overwhelming. The doctor went through what he thought might be the problem — a placental deficiency, which wasn’t a big deal right then, but could put me at a very high risk for preeclampsia — or lesions would start developing on the placenta that would cut off blood flow completely and mean a very early delivery. He meant to tell us all this in a calming way, I think, but it really threw us into a panic mode. Like — what do we do if we deliver at 28 weeks? I was just 20 weeks, then, and the fetus wasn’t viable.

My parents have passed away, so I didn’t have my mom to lean on. I’m very close with my sister; she was really there for me during all this. I have a lot of close friends who have kids, but most of them have not had difficult pregnancies. It did feel like kind of an isolating time.

On the expected and unexpected aspects of giving birth. Our next appointment was a month later: They were impressed with her growth, and decided to see me weekly until delivery. Every week we went in prepared for the worst, but every week it would be the same — we just kept on keeping on. Until, at 35 weeks, there was a slight change in how the placenta was developing. They decided to schedule a C-section for about 37 weeks.

Having kept track of her every week, we knew she’d be small. I was hoping she’d be about five pounds. She was born at just shy of four — that was a little bit of a letdown, I was not expecting that. But she was fine; she came out kicking and screaming.

Because she was so small, they took her up to the NICU, just for observation. Initially, they didn’t think they’d have to admit her. But when they tried to feed her, she wouldn’t take a bottle. For the next month, she didn’t really want to eat.

On conflicting medical advice. She has a congenital heart defect, which we knew about prenatally. While I was pregnant, we got two perspectives on what that would mean for her: The high-risk team discovered the defect and referred us to a pediatric cardiologist, an expert in fetal cardiology. We had a really good visit with him, and he explained the nature of the defect. It’s a fairly common defect; a lot of the time the hole closes up on its own. But in some cases, the hole is big enough or located in a place where it needs to be patched. While I was pregnant, though, her heart was functioning just fine. He thought it would just require keeping an eye on it — that at 3 to 6 months of age, she might start showing symptoms and we might have to think about making a repair. The symptoms would be heart failure, which sounds way worse than it is — it just means that her heart doesn’t work quite right, and she doesn’t have much stamina or energy.

After that, my OB and the high-risk team said that her kind of heart defect is no big deal — that it would be one that would almost definitely close on its own. We had this contradicting information — our cardiologist telling us to prepare for surgery when she was 3 to 6 months old, and other doctors telling us not to worry at all. My strategy was to compartmentalize and think about it later.

On stays in two different NICUs. In the NICU, she was physically fine — but she just wasn’t eating or growing as well as they wanted. The doctors in our first hospital put a lot of focus on trying to get her to eat by mouth; they wouldn’t let us leave until she could eat a certain amount. But she just wasn’t getting what she needed. In the end, they sort of washed their hands of us and transferred us to a different hospital.

Once we got there, we felt good, like we were finally getting the help we needed. Unlike her other doctors, our new doctors ascribed all her problems to her heart defect. They were like, You know, she’s got this huge hole in her heart — it’s like she’s running on the treadmill all day long, burning all these calories just to keep her heart beating. They worked very hard to figure out a good combination of what she should eat. We went from nursing to exclusively bottle-feeding with high-calorie formula.

We were so lucky: The hospital where we were initially is about eight minutes from our house. We didn’t stay there, but we were there all the time. My husband was initially going to take a month off work to spend at home with us, but he ended up waiting to take that time until she was home. We sort of fell into a nice little routine: We’d go over to the hospital in the morning together, then he’d go on to work and I’d stick around during the day. At night I’d come home — we trusted the overnight nurses, especially after we got to know them. I approached going to the hospital like it was my job.

What was so frustrating was that she wasn’t that sick. She was so alert and aware of when we were there. She just wasn’t eating. I felt so compelled to be there a lot and make sure she had all the developmental stimulation a baby needs — singing and reading to her, interacting with her in ways you can’t with kids in the NICU who are super-sick. And I was also trying to pump through all of this, which I do not recommend.

At the first hospital we were at, they’d just built a new NICU, and all the rooms were private. When we were there, we didn’t meet other parents. We were there the bulk of the time — for six weeks. It was very isolating; the only interaction we had was with nurses and occasionally a doctor. But when we transferred, we were in a room with five other beds. In our particular nursery, there were two other couples there as often as us. We were like comrades in arms for the time we were there. It was nice, to have a little bit of social time through all that.

On what’s next for her daughter. Her surgery is really soon. She has a great team — we’ve met them at consultations and feel really good. We thought we’d need to travel for her surgery, but our hospital recently created a partnership with a world-class program. She’ll have one of the best surgeons in the country working on her.

I’m pretty nervous about the recovery. I’m terrified we’ll have a repeat of our NICU experience — that something will happen and we’ll need to stay longer than planned. They expect the recovery to take about a week.

We went to a picnic the other week thrown by a pediatric heart support group for our area. Some of the kids there were really, really sick; others had profound disabilities. For many of them, their heart problems will follow them their whole lives. My husband and I were just sitting there thinking, you know, there’s not really a whole lot wrong with our daughter. We are so, so lucky. She’s so happy, a plucky 5-month-old who just happens to have a hole in her heart. We have a lot of blessings to count, but still — that doesn’t necessarily make the past five months any easier.

In the end, they sent her home with an NG tube — a nasal feeding tube. Now, she eats from the bottle, and whatever she doesn’t take from the bottle, I give her through the tube. That keeps her growth where it needs to be. We went home with that plan: to keep her growing and on track until it’s time to repair her heart. Once we do that, she should have enough stamina to finish a bottle.

When you go through something like this, you feel like an island. You feel like your experience is the worst on the planet. But then you read or hear about someone else, and you’re like, wow, we all have our own difficulties.

A Mom Whose Daughter Has a Hole in Her Heart