A child with SED and Complications at Birth
Written by Jenny, a parent of Trevor with SED and Pierre Robin Syndrome.
Trevor is now twelve years old. He had a vent until age three, trach tube until age eight. I’ll try to remember everything. Trevor was born full term by c-section, in the early 1990’s. We did not know he was a dwarf, or that he had any medical problems until he was born.
He had severe respiratory problems, was intubated and put on a ventilator at birth, diagnosed with SED the next day. The docs tried to extubate, but it did not work. Bronchoscopy revealed severe tracheal, laryngeal and bronchial malasia and stenosis. He was trached at 5 days.
Bottling was very difficult, and caused severe respiratory distress, so he got a GT at about a week of age, and never bottled or nursed. Trevor’s airway was very fragile and any little thing caused respiratory distress. They tried lots of things including CPAP, but ended up with a vent at a pretty high rate and pressure to keep the airway open. His respiratory doc said the airway was the worst he had ever seen in a child that lived.
One thing that we had problems with was keeping the ventilator humidity high enough. At the time, the NICU only had regular vent tubing, and the rainout was severe. At 9 months he moved to M. Children’s Chronic Care Program, and they had heated wire vent tubing. The vent humidity was then able to get turned up enough. What this did was keep the mucous thinner, and prevented a lot of episodes with mucous plugs.
At a few weeks old, Trevor had a very rough time, quite a few episodes of severe respiratory distress. The doctors ended up paralyzing and sedating him for a time so he could just grow and get stronger. This was only for a few weeks, but I do know that the same doc had another patient who was paralyzed and sedated for months in order to survive. We met him when Trevor moved to the CCP, and we were there with him the day he was decanulated!
At a few months old, we were told that Trevor was profoundly deaf, the result of a BAER test. He is not. He has severe hearing loss and wears hearing aids.
Trevor has severe oral aversion. He didn’t eat solid food until age 8, now he eats almost everything, but he still doesn’t chew well.
Trevor came home from the hospital on his first birthday. He had 24 hour nursing care for about 2 years, and part time after that until age 8 when he was finally decanulated.
He was on the vent until age 3. As he got older, his airway gradually got better, pretty much from the bottom up, bronchial tubes first and so on. His upper airway was another story, his doctor termed it “basically nonexistent”. His lower jaw is small, and the tongue was up against the back of the throat so the airway was blocked.
When it was determined that his airway was strong enough to decanulate, he had mandiblular distraction surgery to move the lower jaw forward and open the upper airway. It worked, and just after his 8th birthday, he was decanulated. He also had to have tracheal reconstrution surgery to repair the trach site. Cartilage was taken from his ribs to repair the stoma.
Dr. S performed both surgeries, and at the time was very new. He traveled the country teaching the procedure.
There is a condition called Pierre Robin Syndrome. Trevor was never labeled as such but it sure fits.
Other problems Trevor had included severe kidney stones. He retained calcium and creatinin. Calcium/Creatinin ratio was very high. He slowly outgrew this as he began to move and bear weight, and his bones began to use calucim instead of spilling into his urine.
He was on many meds for years. He took Ibuprofen for the kidney problem, Zantac because of the Ibuprofen. Diuril for fluid retention, and KCl because of the Diuril.
He also had a central line in his chest when he was sent home. Trevor was unusually healthy, and the only time we needed to use the line for meds was when the line itself was infected. It was just a source of trouble.
When he was ill, he usually needed more oxygen, but usually on the vent was on just room air.
As far as the GT, we experimented with lots of buttons, even just used a foley at times. Trevor’s stomach acid was very tough on the Mickey buttons, and at $120 each, insurance didn’t like paying for one or two a month because the balloon kept breaking. We found that the best button for Trevor was the Bard button. They lasted the best.
There is so much to remember. I hope this helps.