by Kristen Troy
On July 15th, 2008 the Tongs expected a healthy baby boy to be born. There was no reason to suspect anything was wrong. The pregnancy had been normal, and Mrs. Tong had done everything she could to have a healthy baby. Unforeseen circumstances and medical mistakes, however, caused the birth to go awry.
About 30 hours in of pushing and the baby monitor showing Eric not breathing, the doctor took Mrs. Tong for an emergency C-section. When Eric was delivered, he wasn’t breathing on his own. The doctors immediately put him on a ventilator, but his condition wasn’t improving. Things weren’t looking good.
Forty minutes went by before the doctors realized the ventilator tube was going into Eric’s stomach, not his lungs. The ventilator tube was corrected, and Eric had air for the first time since he was delivered. At the time, his brain pH was 6.2, which was so much lower than a normal brain pH of 6.99 ± 0.01 because of carbon dioxide accumulation.
A doctor from Neonatal Intensive Care Unit suggested the family transfer the baby to another children’s hospital in order to undergo an experimental hypothermia treatment that could help with reducing the spread, severity, and permanence of Eric’s brain damage after being without oxygen for such an extended amount of time.
Little to Go on
At the Children’s Hospital, Eric was treated for a week, and at the end of the week received an MRI and an EEG. The results were bad. His brain damage extended from the surface all the way to the center of his brain. The doctors said there was no hope for baby Eric. He couldn’t breathe on his own, and he didn’t have lung movement, meaning that his digestion system did not work. The only option left was to take him off life support and let him die. The Tongs had a pastor come and then agreed.
Eric was not expected to live long after he was pulled from life support; they didn’t think he would be able to breath on his own. But to everyone’s surprise, Eric did breathe on his own.
Although his breathing took a lot of effort, he continued for the next two hours, slowly and methodically breathing. Despite what seemed like a glimmer of hope, the outcome was still expected to be the same because he still had no lung movement. The doctor suggested the Tongs go to hospice to be more comfortable while they wait for Eric to leave the world.
After 10 days in hospice without a drop of water going into Eric, a nurse took an interest in their situation; she wondered why they were giving up hope on Eric and encouraged Eric’s parents to not give up on him. After thinking it over and agreeing with the nurse, the Tongs fed Eric for the first time since he was born.
To do this, they filled a syringe with milk and dripped one little drop at a time into their baby’s mouth. Eric’s mother put her tongue into Eric’s mouth to teach him and help him to swallow. She continued feeding the baby drop-by-drop overnight. The next morning, Eric had his first bowel movement and it appeared normal. The Tongs were ecstatic. Their excitement about Eric eating led to nasogastric intubation (NG tube) to provide Eric with consistent nutrients. After about two weeks on the NG tube, the Tongs bought Eric back to the hospital and visited the same neurologist.
The neurologist echoed the painful news the Tongs had heard too many times in Eric’s then short life — there was no hope for Eric to have a life outside of a full-care institution. That was not a life Mr. Tong wanted for his son. They gave up hope, went back to hospice, and took out the NG tube.
During their next stay at hospice, another family came in with their child who had a similar prognosis, and the families talked. When the mother of the other family came to see Eric, she was surprised he was on hospice. Eric was able to do more than her child who was months older. Glimmer of hope shining, the Tongs sought yet another opinion.
The Tongs wanted to have a second opinion. They asked the hospice they stayed to provide a doctor from another children’s hospital in the area. The doctor from another children’s hospital looked over Eric’s file and, seeing him for only a short period of time, said he would be okay! At last, the news they were so desperately hoping to hear. The doctor diagnosed Eric with severe cerebral palsy. She said Eric was in good enough condition to go home, and on September 2nd, almost 1.5 months after Eric was born, the Tongs brought him home for the first time.
From that moment on, they did everything they could to make sure Eric had the best chance at a full life. They had him in therapy once a week every week until he was three years old. From ages three to six years old, Eric was in intensive therapy, over 7 hours per day every day, in China. This helped him to be able to swallow, talk, walk, and write, and for a boy who was expected to not be able to walk let alone live much longer than a few weeks, these were cherished milestones for the Tongs.
When Eric was seven, the Tongs brought him to HAC for swim lessons and aquatic therapy as an alternative to his usual therapy. For the last three years, he’s been working with HAC Swim Instructor, Sydney Wolfe. His lessons started out in the warm water of the therapy pool to get rid of stiffness caused by his cerebral palsy. The intention was never for him to swim laps — they didn’t know if that would ever be possible.
Meeting expectations has never been Eric’s thing, though. A year ago, Eric moved from the therapy pool to the lap pool to try to swim an entire lap doing backstroke. Eric was doing so well, and had almost reached the end of the pool, but started to get tired as he got close to the wall. Mr. Tong recalls the lifeguard on duty cheering and encouraging Eric to keep going, telling him he was doing great. Eric reached the wall, and everyone was ecstatic.
Eric has been learning and practicing all four swim strokes this past year. The Tongs have found that the muscles he works on in each of the strokes help him in various other activities and therapies, too. Eric’s brain as successfully grown back, revealed by a second MRI taken when he was six years old. Eric is studying in a regular class now.
Mr. Tong believes Sydney’s patience, creativity, and initiative during lessons has helped him progress to his swimming ability today. Mr. Tong also said Aquatics staff members Sydney and Marsha Dombrowski are always very dedicated and supportive when helping to schedule lessons for Eric. When Mr. Tong got a new job in Boston in the past year, they thought of moving. The biggest hold up was Eric would not have the community, support, and swim lessons he gets at HAC – so they stayed.
The Tongs plan to continue to have Eric in swim lessons for years to come. They will let him swim for the rest of his life, which is what Eric’s physical therapist recommended. They also hope one day he may be able to swim on a Special Olympics team. Mr. Tong wanted to share Eric’s story so people could see how a strong community can give hope and encouragement, how HAC’s facility and programs helped their son, and how HAC can help other families that have members with special needs.