By Elle Kennedy, mom of CHOC patient Teddy
When I got pregnant with my son Teddy, my husband and I planned to follow the route we took during my pregnancy with our daughter Charlotte—a midwife and practice we were already familiar with. In the years since our daughter had been born, that office had implemented a new rule—all babies must undergo a fetal echocardiogram, an ultrasound test during pregnancy to evaluate the heart of an unborn baby.
My pregnancy had been normal, so when I went in for this fetal echo around 23 weeks, I didn’t even have my husband Jeremy come with me. We were grateful for the precautionary test, but we didn’t expect for them to find anything abnormal.
What they found was anything but normal.
Teddy was diagnosed with anomalous pulmonary artery off the aorta. Typically, the blood is supposed to go through the heart and then into the lungs and then back through the other chamber of the heart. Teddy’s diagnosis meant that one of his lungs was attached in the wrong order. This lung was getting blood that was already oxygenated by the other lung, which can make the misaligned lung really sick. The lungs are not supposed to receive oxygenated blood; they’re supposed to oxygenate the blood.
Sometimes this condition isn’t caught in utero, and the baby seems healthy at birth, but a few months down the road they have breathing issues and the detective work to find a diagnosis begins. We were fortunate that this was diagnosed before Teddy was born, so we could be prepared.
Making a new plan
I quickly understood that the rest of my pregnancy would look different than my first, and that my birth plans would change. One of my first thoughts was, “I need to find a doctor who can deliver at St. Joseph Hospital in Orange, so that we can be right across the street from CHOC.”
We found an OB/GYN and were also referred to Dr. Nita Doshi, a pediatric cardiologist at CHOC who specializes in fetal cardiology.
In the weeks leading up to Teddy’s birth, we had a big meeting with Dr. Doshi; Dr. Richard Gates, Teddy’s cardiothoracic surgeon; many other CHOC doctors; my OB-GYN and the St. Joseph labor and delivery team. There were 15 people in the room with us, ready to share the game plan for Teddy’s birth and immediate care after he was born. Everybody went around the room, in order of what would happen to me and Teddy. It was like “OK, when you come in, here is going to be the birth team. Once he’s born, here is the team taking over. When he goes into surgery, here’s that team.” Everybody got to walk us through what they were going to do and what the stages of care would look like. That experience was amazing for us. It was really nice to be able to meet everyone ahead of time.
This was an entirely new experience for us. We had a lot of fear going into it. As a parent, you hear open heart surgery and it sounds so scary. Getting to talk to people on the team and learn about their area of expertise, and have them tell you what to expect, was a very relieving experience for us. They thought through every step of the journey.
After a lengthy but healthy delivery, Teddy was born weighing seven pounds, 14 ounces. After a quick check-up to ensure his heart was doing OK and he was breathing properly, we were able to spend 30 minutes with him before he needed to be taken to CHOC.
Teddy spent four days in the cardiac neonatal intensive care unit (NICU) at CHOC before undergoing open heart surgery.
During this two-and-a-half-hour surgery, Dr. Gates removed the right pulmonary artery from the aorta and transferred it to its proper position on the main pulmonary artery.
Caring for the whole family
After surgery, Teddy spent two weeks in the cardiovascular intensive care unit (CVICU). We would visit him every day, and then go home in the evenings to put our daughter to bed. We knew our son was in good hands, and we wanted to make this time as normal as possible for his big sister.
Although the hospital staff was there to care for Teddy, they helped us prepare our daughter for her first hospital visit, as well. When Teddy was first brought to the CVICU, he was hooked up to all kinds of machines and wires. That can be scary for siblings to see. They encouraged us to wait until he was closer to going home, so that it would be a more positive experience for Charlotte. We also knew that Teddy would return to this hospital many times for other procedures and check-ups, and we didn’t want Charlotte to think of a hospital as a scary place. When she did come in, it was amazing. She loved getting to see her baby brother, and all she wanted to do was hold him. The staff was so attentive to her. Even though this wasn’t the way we intended to welcome our son into the world, it turned out to be an amazing experience.
To thank the hospital staff, and to help Charlotte feel more involved in her brother’s care, we brought small felt hearts on safety pins for her to give out to his nurses and doctors. She walked around the unit handing them out and said, “Thank you for taking care of Teddy.” It’s a tradition we’ve continued at appointments to this day.
When Teddy was around 3 weeks old, we finally got to bring him home. His sister was so happy! He had a bandage on his chest so he couldn’t do tummy time right away, but other than that it was a normal routine.
Teddy’s first angioplasty
Three months later, we came back to CHOC for an angioplasty. Scar tissue was building where they had stitched the artery in place, so the artery wasn’t growing properly. During this procedure, they made a small incision in an artery in Teddy’s thigh, inserted a small balloon and snaked it up to his heart, and slowly expanded the balloon in order to safely break up the scar tissue and gently stretch the artery. This time, we only had to spend one night in the hospital for observation.
Teddy had a follow-up angioplasty when he was three years old. He will need another angioplasty in another three to five years, depending on how his artery grows in relation to the rest of his body. Someday, he will have a stent (a tiny mesh tube) put in to permanently keep his artery open.
Throughout this process, CHOC has been amazing for us because they’re willing to take our say into consideration. Our team always asks us, “Are you comfortable with this plan?” We have been involved in the decision-making progress every step of the way.
Teddy is smaller than the average 3-year-old boy. Personally, I think it’s a blessing that he’s growing a little slower than other kids his age. It’s giving his heart time to grow at a slower pace because the rest of his body isn’t growing as fast. Other than his smaller than average stature, he’s a healthy kid. He underwent occupational and physical therapy for a while to help him meet milestones, but he graduated from those therapies at 18 months and now he is hitting or exceeding all of his milestones.
These days, we see Dr. Doshi every six months for a check-up. Despite many appointments and procedures over the last few years, Teddy has no fear of the doctor. When he sees a Choco Bear logo on a billboard, he points and says, “Mom that’s where I went and had my operation. They took care of me there.”
If you look at him, you wouldn’t know he had a heart condition. Unless you see him shirtless and notice his scar, you would think he was just a typical kid. He talks well for his age, and he loves anything with wheels. He’s a very brave young boy, which we knew from day one.
A message to other moms
To any other moms with hospitalized babies, know that you are not alone. For me, the hardest part of this journey was not knowing anyone else whose baby was hospitalized after birth. Know that there are other parents out there who understand what you’re going through.
This journey could have been a scary experience for our family, but I never imagined it could actually be a positive experience. I thought we would just have to get through this, but Teddy has so much fun laughing and playing with the nurses who take care of him before and after procedures.
CHOC has done a really great job of thinking through everything from a patient perspective and a parent’s perspective. They try to create the best possible experience from start to finish for everyone involved. They make it a reassuring process for parents, a happy experience for siblings, and a safe experience for patients.
At CHOC, everyone’s goal is to make a child’s experience a positive one.
For more about CHOC’s Heart Institute