Like many families, the reality of how fortunate we are to live near one of the country’s top ranked children’s hospitals was not something we ever really thought about. That all changed when Danno came into our lives.
During a routine ultrasound while I was pregnant with twins last year, the doctor discovered that the heart of one of the twins was not developing properly. We learned even before he was born that our son, Daniel (eventually nicknamed Danno after we all fell in love with our 2-year-old’s attempts to pronounce his baby brother’s name) had a congenital heart defect. The exact diagnosis was double outlet right ventricle with pulmonary atresia and a large ventricular septal defect. It’s a mouthful, and we were frightened, but knew we were in good hands at University of Michigan.
In early October, I was admitted to U-M’s Von Voigtlander Women’s Hospital because my twin boys were beginning to show signs of distress. The doctors decided to deliver them on October 27 at 34 weeks gestational age.
As expected, Danno required specialized care in the pediatric cardiothoracic intensive care unit (PCTU), and eight days later, Dr. Ohye operated on him (the Rastelli procedure) to correct his heart defect. The surgery went well and Danno came home on November 18. We thought we were done with Mott for a few years until Danno needed a bigger conduit placed as he grew, other than periodic visits with his cardiologist, of course.
But the story doesn’t end there
Danno was later discovered to have a condition called craniosynostosis, which means that the bones in his skull fused too quickly. The condition can cause pressure within the skull and lead to brain damage, blindness and developmental delays. We were tremendously grateful when our plastic surgeon, Dr. Vercler, told us he could do the surgery endoscopically rather than having to do the typical full reconstruction on his head which would have been more risky due to his heart defect. The surgery would involve making two incisions and removing a strip of bone from his skull and he would then need to wear a helmet to help guide skull growth.
The surgery was scheduled for late January. Danno’s heart team (led by Dr. Russell) thought it would be a good idea to do some additional imaging of his heart while he was already under anesthesia for his skull surgery, to give them a baseline from which to compare his heart as he grows and to get a better assessment of a small bulge they saw on a previous echocardiogram.
Our thoughts were focused on the surgery – but it was the cardiac CT they did afterwards that ended up changing the story. The images showed that Danno was developing what the doctors called a large pseudoaneurysm. The new vessel they put in his heart during the first surgery had developed a contained leak. It was an unexpected, but not uncommon complication of the heart surgery. The fact that it was caught as soon as it was, though, may have saved his life.
Another surgery was scheduled four days later to replace the conduit on the day he turned three months old. The surgery with Dr. Si was successful and Danno came home for four weeks until he developed a post-operative infection. He was discovered to have an epidural abscess, a pocket of infection sitting between his brain and his skin where they had removed part of his skull. He was re-admitted to start IV antibiotics under the supervision of the Infectious Disease team.
Danno’s been home since the end of February. He had to wear a helmet for his craniosynostosis until he turned 1 year old. He responded so well that his craniofacial team is interested in using his pictures in a textbook.
He also has had some issues eating and was throwing up frequently so he has started seeing a nurse practitioner at the GI clinic. He struggles to gain weight, but he’s a fighter. Shortly before his first birthday he had a gastrostomy tube placed to help supplement his feedings. We also discovered that he has some hearing loss. We are so grateful that Mott Children’s Hospital screened his hearing early. He now has hearing aids, which help tremendously and will allow his brain and language skills to develop properly, and he loves his audiologist, Katie Kuboushek.
To determine if there is an underlying genetic condition causing these various problems we consulted with Dr. Ahmad in the genetics clinic. She elected to do full exome sequencing, a fairly new genetic test, which we recently learned came back negative.
We are so grateful that Mott is home not just to one of the nation’s top children’s heart centers, but to a world-class craniofacial program, GI program, ENT program, etc. The fact that his medical teams have been able to integrate his care has not only been much easier on us than it might have been, but we truly believe that in the case of the plastic surgery and heart team working together to coordinate care – it may have saved his life.
This hasn’t been the easiest road, but we are tremendously grateful to everyone at Mott for their care and their compassion and all the little things they’ve done to make our lives a little easier. The expertise of five departments was more than we thought we would ever need for the whole family, let alone just for one baby in the first year of his life, but it’s something we’re thankful to have access to at all, let alone so close to home.
Take the next steps:
- Learn more about the Congenital Heart Center at Mott.
- Learn more about the Craniofacial Anomalies Program at Mott.
Diana Schneider and her husband, Adam, live in Tecumseh, Michigan, with their three boys Nathaniel, Andrew and Daniel.
University of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.