When our daughter Samantha was born six weeks premature, she had a host of medical problems. Because she had difficulty breathing on her own she was put on a ventilator. She also couldn't swallow properly and doctors had to insert a G-tube into her stomach. Despite the G-tube Samantha was showing signs of "failure to thrive" and was not gaining much weight.
When the NICU where she was cared for since birth said there was nothing more that they could do for her, and that she would probably not make the year we were devastated. We wanted so much for her to be healthy and come home, but 20 to 30 daily spontaneous desaturation episodes (blue spells) meant that she could not.
Desperate for a second opinion, we contacted Boston Children's Hospital.
Coming to Children's
Within a few days of Samantha arriving at Boston Children's Neonatal Intensive Care Unit (NICU) we met Dr. Rhein, the director of the Center for Healthy Infant Lung Development (CHILD). Dr. Rhein felt confident that there was something that could be done for Samantha. He listened to our concerns, carefully reviewed Samantha's medical history and worked with various disciplines including Otolaryngology, Gastroenterology, Cardiology, and Neurologyat Boston Children's to make sure that we had a comprehensive plan of care.
When we expressed a desire to be active participants in Samantha's care, Dr. Rhein welcomed us and encouraged us to be part of the decision making process. He also took the time to educate us on various tests, medical procedures and diagnoses. Since neither I nor my husband are in the medical field this took a lot of time and patience.
One of the tests that Samantha took was a sleep study. This study showed that Samantha had obstructive apnea caused by tracheomalacia (floppy airway), which was the main cause of her 20 to 30 spontaneous desaturation episodes throughout the day.
Samantha's medical team discussed two treatment options: a tongue-lip adhesion and a tracheostomy.
Ultimately, the tracheostomy was chosen. The results were remarkable. To quote Dr. Volk, Samantha's otolaryngology doctor at Boston Children's, "If any kid needs a tracheostomy, it is this kid." That became apparent to us after surgery when Samantha's sporadic desaturations were all but gone and we were told that Samantha could come home.
"HOME! HOME! HOME!" It was all we wanted. We wanted our little girl home where she belonged, where she could play with her brother and we could hold her whenever she cried. We wanted to be sleep deprived like other parents of newborns, because our little girl kept us up at night wanting to be fed, not because we were constantly worrying. Home did not seem like an option to us until she had a "trach." We were (and still are) so elated that she was going to come home thanks to Dr. Rhein and Dr. Volk and all the other nurses and staff at Boston Children's Hospital.
Despite all the joy that we were feeling, we knew it was now up to us to learn tracheostomy care before Samantha could safely come home. The staff was very accommodating in providing the training. They worked around our schedule, which seemed tough with a 2-year-old at home and work schedules. With the help of Mary Horne, the "trach" nurse, and Dr. Rhein we were able to transition home within a few weeks.
We became proficient with suctioning, monitoring breathing with and without a pulse-oximeter, resuscitation and learning what to do in an emergency. The nurses in the Boston Children's NICU also gave us plenty of opportunities to practice and taught us many different techniques. By the time we were ready to go home, we felt like seasoned caregivers.
However there were some episodes that tested our resolve. Samantha had three blue spells and several emergencies within her first two months. It is a very scary situation when your child stops breathing and every second seems like an eternity. The training, guidance, care and accessibility of Dr. Rhein allowed us to manage these situations successfully. The support that we received from Dr. Rhein in and out of Boston Children's Hospital helped us through these tough times. I honestly believe that Samantha would not be with us if it weren't for his support, accessibility and expertise.
We have been very fortunate to be able to work with Dr. Rhein and his staff on a more routine follow-up basis now that Samantha is stable. The team has been attentive, caring and extremely helpful. In the clinic, Lauren Pearlman, a respiratory specialist, and Dr. Rhein work together monitoring Samantha's respiratory status and adjusting her ventilation. Their adjustments have paid off with the weaning off of oxygen as well as a tremendous amount physical and developmental growth. Most importantly, our daughter, who some believed would not survive her first year, will be celebrating her first birthday in March at home with her grateful family.
Updated January 2012