The color pink. The color of cotton candy, a beautiful carnation or a newborn baby.
For Rebecca and Ryan Pritchard of Williamsport a pink complexion is something they would not see with their newborn daughter for the first several years of her life.
Anna was born May 21, 2007, at her local community hospital. Her parents were unaware that there were any complications at her birth.
“We were first-time parents, so we really didn’t know everything about what was happening,” Rebecca said. “She was blue when she was born, but we really didn’t think anything of it.”
Doctors said there were some issues with Anna’s oxygen levels and that she had a mass in her abdomen. They determined that she should be flown by Life Flight® to Geisinger Janet Weis Children’s Hospital. Ryan drove to Geisinger, while Rebecca stayed at the community hospital to recover.
By the time Rebecca was released from the hospital the next day, Ryan had already met with the cardiology team and the Neonatal Intensive Care Unit team. Dr. Robert Mangano, director of Pediatric Cardiology, examined Anna and made the preliminary diagnosis.
“Anna was transported here mostly because she had a mass in her belly that turned out to be nothing serious. It was just a little hernia,” Dr. Mangano said. “She became blue which indicated that her oxygen levels were low. We investigated why using an echocardiogram and advanced imaging techniques and that was when we found that she had a heart defect.”
Anna’s heart defect was called double outlet right ventricle atrial septal defect and pulmonary atresia. The combination of defects consisted of a large hole in her heart and no outlet for blood to get to her lungs, Dr. Mangano said.
Anna was treated with medication to stabilize her condition, but it was only a temporary solution to her problems.
At about 4 days of age, Anna underwent surgery that consisted of placing a tube to direct blood into her lungs and to reconstruct her lung arteries, which were very small, Dr. Mangano said.
Anna’s heart was only the size of a walnut, making it difficult for anything but temporary treatments until she had some time to grow. At about 8 months, Anna had a more definitive operation to take care of the heart defect.
“That surgery consisted of removing the temporary shunt that was placed during the last procedure, reconstructing her lung arteries to make them larger, and connecting the heart and the lung arteries with a valve. In addition, the large hole inside the heart had to be closed,” Dr. Mangano said.
For her parents, the second surgery was far more difficult than the first. Anna stayed in the Pediatric Intensive Care Unit for 28 days. She had some complications and was pretty sick during her stay. Her oxygen levels remained low. She was not conscious for about a week and a half. Rebecca, who works as a teacher in Danville, was able to work half days and spend the rest of her time with Anna.
“We stayed at the Pine Barn Inn for most of the time,” Rebecca said. “One of our parents would stay for a week and then they would switch. We spent some time at the Ronald McDonald House of Danville, which was very nice, but for the most part, we lived at the PICU and slept at the Pine Barn.”
Even after leaving the hospital, the Pritchards did not see a huge improvement in Anna’s condition. She was sent home with oxygen to try and help with her saturation levels.
“The second surgery was way more stressful on all of us. Her oxygenation level never climbed above 85,” Rebecca said. “She still looked kind of pale and had a bluish tint with no real explanation at that point. After multiple catheterizations, echocardiograms, and MRI’s we still couldn’t quite come up with what was going on.”
During their stay in the PICU after the second surgery, the Pritchards could not say enough about the exceptional care that was given to them and Anna.
“She was under great care and very watchful eyes,” Rebecca said.
“They were great and very thorough,” Ryan said. “The final statement of every conversation with staff members was always, ‘Do you have any other questions.’ Until we said no, that’s when the conversation ended.”
Although her blood oxygen levels were still low, Anna seemed to do very well after her recovery period. Dr. Mangano thought it best to wait until Anna was bigger to perform an additional third surgery.
“We investigated all the parts of the heart and really didn’t know why she was still as blue as she was,” Dr. Mangano said. “The theory was that she still had mixing of oxygenated and unoxygenated blood inside the heart that needed to be taken care of. Anna’s heart defect is one that almost always requires more than one surgery, she needed some heart catheterizations and a lot of testing along the way, but in the end we were able to help her and she should do well into adulthood.”
Last summer Anna underwent her final surgery with Dr. Anastasios Polimenakos, pediatric cardiovascular surgeon. The surgery was the real turning point for Anna.
“The major turn of events was during the course of the last surgery,” Ryan said. “Dr. Polimenakos found the mystery defect that had been plaguing her.”
While performing the surgery to make final repairs to the hole in her heart, Dr. Polimenakos discovered an unroofed coronary sinus that had not been found until that point. It was an extra vein that was connected to the wrong side of the heart and was the reason for her blue complexion.
“During the operation we explored the upper and lower chambers of the heart. We were able to identify the problem,” Dr. Polimenakos said. “So we fixed that, gave her a new valve and made the left pulmonary artery bigger.”
The surgery lasted about six hours and when the Pritchards were able to see Anna in recovery, they were astonished at what they saw.
“To anyone else looking at her lying there with all the tubes and things, they would have been horrified, but we came in and we were shocked,” Ryan said.
“We walked in and said ‘Oh my God, she looks great!’” Rebecca added.
For the first time since their daughter was born, five-year-old Anna had a pink complexion.
“Her fingernails had always been blue and always looked like she was cold,” Rebecca said. “After the surgery they were pink. I was so excited, I took a picture of her fingernails and sent it to people because they were pink for the first time.”
Dr. Mangano told the Pritchards that they had found and repaired the problem and that Anna’s saturations were right around 100 percent. Unlike their last stay, Anna was much more alert following the surgery and asked to have her tube removed that evening. She was in surgery on a Tuesday and was discharged by Saturday.
Before the final surgery the Pritchard’s would notice that Anna would get winded during activity and would sometimes stop to rest. Now Anna is full of energy. She is extremely active and takes ballet and tap.
“I like to dance and play on the swings,” Anna said, while playing in her living room in her pink leotard. “I like to play with my friends in school and I like music class.”
During the course of her treatment, Anna benefited from many Children’s Miracle Network funded items. Special equipment that was used during her surgeries and the heart catheterization laboratory are a few examples.
“The heart catheterization laboratory is dedicated to children’s care here at Janet Weis Children’s Hospital,” Dr. Mangano said. “The lab was purchased with Children’s Miracle Network funds and is a state-of-the-art heart cath lab, the kind we need to take care of kids who have heart defects.”
The Pritchards noticed the impact that Children’s Miracle Network had in Anna’s care.
“During her first surgery, the [Celebration Weekend broadcast] was going on,” Rebecca said. “We watched the telethon from the family room that night, and we called in and told the folks that we were in the NICU watching the telethon. They wouldn’t take our money but they were very appreciative for our call.”
Anna’s treatment and surgical repairs improved her health 100 percent and Dr. Mangano says that Janet Weis Children’s Hospital allowed for her excellent outcome.
“The heart defect Anna had was a surgical defect,” he said. “Having a skilled congenital cardiovascular surgeon working closely with all the other doctors and staff as a team is imperative in the care of these children. With the people we have here and having the technology they need, these children can do very, very well.”
Anna is living proof of this collaboration.
“I feel good,” Anna says as she runs around her home playing with her younger brother, Adam.