When he was 5, Nicholas Mohr did something his parents feared was impossible. He came home.
Nicholas Mohr is the beautiful five-year-old son of Amy and Dr. Richard Mohr. Nicholas’ big brown eyes light up when he hears the theme song to “Go, Diego, Go!,” a popular children’s television show. However, Nicholas is not like other children his age. “Nicholas is special,” explains his older sister, Charley. “He has a baby brain.”
Nicholas was born with a congenital brain disorder called Lissencephaly, which means “smooth brain” because of the lack of brain folds and grooves. As a result, Nicholas is developmentally the age of an infant. He also suffers from frequent seizures.
Amy recalls that she enjoyed a healthy pregnancy, and Nicholas was born full-term. But when he was just two months old, The Mohr’s began to notice some developmental delays in their son. They questioned whether Nicholas was deaf or blind when he did not notice they had entered the room. The concerned parents tested Nicholas’ hearing and vision, but no problems were found.
At four months of age, Amy was faced with the terrifying experience of Nicholas’ first seizure. Amy called her husband, a family medicine physician at McLeod Family Medicine Health and Fitness, who was on-call at the time. He told her to hang up and call EMS immediately. He was on the way home and they would go to the McLeod Emergency Department together.
At the Emergency Department, physicians and staff monitored Nicholas, and determined that he was continuing to have more seizures. They began to administer medication to stop the seizures and ordered a series of brain scans, which revealed that Nicholas had Lissencephaly.
That night, while Nicholas was monitored in the McLeod Pediatric Intensive Care Unit (PICU), Amy researched Nicholas’ newly diagnosed condition at his bedside. She wept as she learned that most children with Lissencephaly die within two years after birth.
The Mohr’s did not give up hope for Nicholas and pursued in-home therapy. Upon returning home, they immediately enrolled him in physical, occupational, and speech therapy.
Despite anti-seizure medication, Nicholas continued to suffer from seizures. During a seizure he would hold his breath, but begin to breathe again once the seizure was over. This past October, however, Nicholas experienced a particularly long seizure and did not regain his breath once the seizure had run its course. Nicholas’ therapist, Shannon Wyont, PT, was at the Mohr’s home, and began CPR while Amy called 911.
“Even though we were doing rescue breathing, it was not adequate,” remembers Amy. “By the time the paramedics got there, Nicholas was purple.”
Dr. Mohr rode with Nicholas in the ambulance, where emergency responders inserted a tracheal tube to open up Nicholas’ airways. They also connected him to a ventilator to force oxygen into his lungs.
When Amy arrived at the McLeod Emergency Department, her husband advised her to stay in the waiting room. “I could tell by the look on his face that it was bad,” she said. “Sitting in the waiting room, I thought I was going to die. I crumpled to the floor and cried because I just didn’t have the strength to sit in a chair. I do not know who she was, but an Emergency Department staff member sat with me on the floor, put her arms around me, and just let me cry.”
In the exam room, McLeod Emergency physicians and staff were monitoring Nicholas’ heart rhythms and saw that his heart was in ventricular fibrillation. McLeod Emergency physician Dr. Bryon Frost explained that this abnormal heart rhythm is caused by an uncoordinated contraction of the cardiac muscle of the ventricles in the heart, making them quiver rather than contract properly.
“Ventricular fibrillation is a medical emergency that requires prompt advanced life support interventions,” he said. “If the patient is not revived after a certain period of time, they could sustain irreversible brain damage or death.”
Physicians and staff immediately began resuscitation procedures, giving Nicholas several rounds of epinephrine, or adrenaline, and defibrillating his heart, shocking it back to a normal rhythm. The efforts would work temporarily, and then his heart would return to the abnormal state. The team then tried repositioning the tracheal tube in an attempt to give his lungs more oxygen.
“I was thinking, ‘Is this the day we’ve been dreading, where will we lose Nicholas?’” said Dr. Mohr. “After what seemed like an eternity, I finally heard someone say, ‘We’ve got a pulse!’ They had saved his life.”
Dr. Frost recalls the intense situation. “I did not think Nicholas was going to survive,” he said. “It was really stressful on all of us. But instead of panicking, our physicians and staff get calmer in these situations. Resuscitating patients is our ‘specialty.’ It is so ingrained in the way we work. Everyone did their job like they were trained to, and Nicholas’ life was saved because of the expertise and experience of the McLeod Emergency Department physicians and staff.”
Nicholas was transferred to the McLeod PICU to be monitored during his recovery. Dr. Judith Ugale-Wilson a McLeod Pediatric Intensivist, explained that Nicholas required support from the ventilator to assist with his breathing, and he was also given medication to control any additional seizures he may have as well as a sedative to make him more comfortable while he was on the ventilator.
It was unclear what Nicholas would be like once he was taken off of the ventilator and awake. “One of Nicholas’ favorite things in the world is “Go, Diego, Go!,” explained Dr. Mohr. “When he hears the theme song, he starts kicking and laughing. After he woke up, I told the PICU staff that the easiest way to tell if he’s okay is to turn Diego on. When he heard that song, he started squealing and kicking his legs, and I immediately said, ‘Nicholas is just fine’.”
“Kids are very different than adults,” explained Dr. Ugale-Wilson. “Some adults would not have recovered after being without oxygen for that period of time.”
After two nights in the PICU, Nicholas was well enough to be transferred to a patient room on the general Children’s Hospital floor. His parents were delighted when the pediatric staff gave Nicholas a standing ovation as he was wheeled out to the floor.
“It was really touching,” said Amy. “We have been using the McLeod Children’s Hospital since Nicholas was three months-old, and they have been taking care of him for the last four-and-a-half years. I have had nurses come up to us and say they were honored and privileged to take care of Nicholas.”
“As a McLeod physician, I have interacted with the staff in the care of patients, and I can tell you, that is the way they treat all of their patients,” said Dr. Mohr. “They have a calling. Most of the nurses and staff have been in the McLeod Children’s Hospital for a very long time, and I believe it is because they love what they do, and I appreciate it.”
The Mohr’s note that since Nicholas’ last hospitalization, he has been a more energetic and playful child. “It had been months since he laughed or rolled over, and he was very lethargic,” said Dr. Mohr. “We do not know if this last spell ‘woke him up,’ or if it was the medication adjustment, but he has been laughing a lot. He is also on a pulse-oxygen monitor in the evenings, and the beeping noises will make him giggle. Our daughter has found that if she replicates the ‘beep-beep,’ he will giggle on command. It is a really good feeling. He is rolling over more and he has greater head control.” Nicholas also continues to receive therapy at home once a week.
“He is just fantastic,” exclaims Amy. “Despite the things Nicholas cannot do, he still smiles every morning when I wake him up. It is the sweetest feeling.
“When you are pregnant, you take for granted that your child is going to be healthy. But when you become the parent of a special needs child, you get to be a witness to miracles. We see the miracle in Nicholas laughing out loud and we do not take things for granted. You move from a place where you are grief stricken to where you are absolutely honored to be their parent.”
“If I have had a rough day, all it takes is for me to look at Nicholas and see him smile, and I realize I do not have a thing in the world to complain about,” adds Dr. Mohr. “If he can be happy with his disabilities, then I’m good.
“As a physician, he has given me insight into caring for other special needs children. I can better relate to the parents’ feelings and some of the issues they have. As a parent, Nicholas has taught me to have compassion.”
Amy and Dr. Mohr also spent time in the McLeod Neonatal Intensive Care Unit (NICU) when their third child, son Nolan, was born 14 weeks premature, at 26 weeks gestation. He weighed two pounds and two ounces at birth, and one and a half pounds at his lowest weight.
“Again, the McLeod Children’s Hospital physicians and staff in the NICU were so encouraging and supportive,” said Amy. “Nolan stayed in the NICU for three months. I would spend the nights up there, and I really got to know the staff. It was just a wonderful experience. I remember telling the nurses I was actually really going to miss them when we were home. They were great.
“Ric and I credit McLeod for saving both of our sons’ lives. We are so incredibly grateful and fortunate to have a Children’s Hospital so close to us that takes such good care of our children.”