When watching strong-willed Brynlee O'Bryan toddle around without anyone's help, you would never guess she spent the first 11 days of her life lying on her back in the hospital. She falls down in the dirt, gets right back up, and keeps going without so much as a whimper. This seems to be a family trait.
"We were very excited when we found out we were pregnant with Brynlee," says her mom, DeAnna O'Bryan. "We had been trying for a few months and when we found out, we were overjoyed."
DeAnna had a very smooth pregnancy—minimal morning sickness and a good checkup at every obstetric appointment with no indication of complications.
"I was induced Dec. 21, but Brynlee wasn't ready yet," DeAnna recalls. "The next day, they decided to do a C-section, and Brynlee made her grand entrance into the world on Dec. 22, 2011, at 12:27 p.m. She came out, cried three times, opened her eyes and just watched everybody. She was awake all day and she slept all night, unlike a typical newborn."
On the last day of their hospital stay, Christmas Eve, Brynlee had been doing well for a two-day-old baby, and DeAnna was doing exceptionally well for having undergone a cesarean section. However, all that was about to change.
Doug Schultz, MD, Shannon Clinic pediatrician, examined Brynlee and heard a heart murmur. An EKG was ordered, and the family was told to return to the hospital the next day, Christmas, because Brynlee was jaundiced.
"Dr. Schultz heard a regular heart murmur, which is common in newborns and generally does not mean anything severe is happening," says Stephen Sawyer, MD, the pediatrician who had been caring for Brynlee from birth until Dr. Schultz took over on Dec. 23. "He received a preliminary report from the EKG tech and thought everything looked OK. Thanks to Children's Miracle Network, we have new, advanced technology at Shannon that allows us to download the EKGs so they are immediately accessible to the pediatric cardiologist in San Antonio. After reading Brynlee's test results, the pediatric cardiologist called back and said she was worried about what is called coarctation of the aorta."
DeAnna recalls in detail the day they found out about Brynlee's condition.
"We woke up late Christmas morning, gave our daughter a bath for the first time, dressed her in her Christmas outfit and took off to San Angelo," says DeAnna. "When we got ready to leave the appointment, they told us the pediatric cardiologist might have seen something so they wanted to do another EKG. We left to go back home but stopped before leaving town to try and nurse Brynlee. And, that's when we got the phone call…"
On the other end of the line, a nurse was giving instructions for the family to return to the hospital because Brynlee needed to be flown to San Antonio immediately.
"As soon as we got there, they started IVs on her, put her under the bilirubin lights—everything was moving so fast," DeAnna recalls. "Dr. Schultz explained what was going on to us the best he could, but we were brand-new parents, and all we heard was that our baby had a heart problem."
The weather that Christmas Day was fitting for the season—sleet and snow do not mix well with air transportation. The decision to transport Brynlee was made at 2 p.m., and she and her mother were finally on their way at 9 p.m.
"It was hard to watch them wheel her out on a stretcher in a clear box," DeAnna says. "You couldn't touch her; I just can't explain to you how that felt. I flew with Brynlee to San Antonio, and my husband drove and actually beat us there."
The family arrived at the hospital after midnight and was instructed to try to get as much rest as possible. The next morning, they spoke to the pediatric cardiologist, who drew a diagram of a normal heart and one of Brynlee's heart to help explain her condition—coarctation of the aorta.
Brynlee's condition accounts for approximately 4 to 6 percent of all congenital heart diseases and occurs once in every 4,000 to 10,000 births. The aorta pumps blood from the heart to the rest of the body. A coarctation is an area of the aorta that is narrowed like an hourglass. As the area becomes narrower, blood flow is severely restricted. Brynlee was jaundiced because her liver was not getting adequate blood supply. She would not nurse as her bowels had begun to dilate because of the lack of oxygenated blood flow.
At one point, the lower half of her body turned blue because of the lack of blood flow.
"This is a very serious situation and can be life-threatening," says Dr. Sawyer. "Brynlee was stabilized when she left Shannon but almost into shock by the time they arrived at the NICU. Her coarctation was so closed-down that if she hadn't gone to the NICU that day, she would have become very sick. Dr. Schultz picking up on the murmur and the pediatric cardiologist in San Antonio being able to read it immediately in real-time saved her."
During all of this, what was actually keeping Brynlee alive was another heart defect—patent ductus arteriosus (PDA). This means there was a small opening between the pulmonary and aortic valves in Brynlee's heart. Normally, the PDA closes three or four days after birth. The defect saved her life because it acted as a bypass for the blood that could not pass through her aorta to flow to the rest of her body.
The O'Bryans arrived in San Antonio on Monday, and Brynlee did not have surgery until that Friday because of complications. She needed to be as healthy as possible to undergo the procedure.
"All you could do was go in there and watch her," DeAnna says. "She was so tired, so she just lay there. But she never cried, never. Her dad would tell her to smile and she would. Because she couldn't eat, she was getting skinnier and skinnier and got down to 5 pounds. If we wanted to hold her, we had to put on a gown and gloves. You always hear you bond with your baby during the first two weeks of their life, and I was only there part of the time. She was in other peoples' care."
During Brynlee's surgery, the small part of the aorta was cut out and then the aorta was sewn back together. This is called an end-to-end anastomosis. The PDA was also closed. A little less than two hours after her procedure began, DeAnna and Ralph were informed that their baby girl had gone through surgery perfectly. She even opened her eyes as they wheeled her past her parents into the recovery room.
"We finally got to come home after 11 days in San Antonio, which was scary all over again," DeAnna says. "What if there was something wrong with her scars? You never prepare yourself for your child having a problem like that, and afterwards all you can think is, ‘What if something else happens?'"
Fortunately, nothing else has happened and Brynlee is a happy, outgoing toddler who can run and play with no restrictions. She loves to be outside with her horses, Cheespa and Studley. The latter was purchased by her dad before she was born, and it won't be too much longer until she's riding him on her own.
After settling in at home, Brynlee had multiple doctor appointments. Now she is down to seeing the cardiologist annually. The only physical reminder of her time in San Antonio is a little scar under her ribcage, which is getting smaller as she grows bigger and healthier.
"After we got home, we went to see Dr. Sawyer, and he told us the cardiologist traveled to San Angelo from San Antonio every Monday," DeAnna says. "Thankfully, because of the funds raised through CMN, we just travel 70 miles up the road to San Angelo. It's right there in our backyard, and it's made life a lot easier. It just helps a lot to be able to count on the people at Shannon to help you."
Brynlee has not had any other hospital stays since her surgery. Possible complications from the coarctation include high blood pressure. There is also a possibility her aorta would need to be ballooned if the scar tissue does not grow with her body, but that is the worst-case scenario.
"For us, Children's Miracle Network is an opportunity to spread awareness," DeAnna says. "Sometimes, the brand-new baby experience isn't always as magical as you expect it to be, there are complications in the road, but with people like CMN and Shannon they can help make it easier. This is an opportunity to let people know that even though there's a bump in the road, it will be OK. You just have to have faith."