God Bless Children’s Hospital of the King’s Daughters (CHKD) for Saving Our Son

I held my 5-week-old son Joshua for the first time tonight.

Josh and his twin brother Dylan were born on April 18, 2011, at Sentara Norfolk General Hospital.  They were premature when they were born at 31 weeks.  Both babies were put on a ventilator and taken away as soon as they were born.  Dylan was sent to the Special Care Nursery at Norfolk General, while Josh, who has Down Syndrome and a related heart defect, was sent to the Neonatal Intensive Care Unit (NICU) at Children’s Hospital of the King’s Daughters (CHKD) – a world-class all-purpose children’s hospital located in Norfolk next door to Norfolk General.

Dylan was taken off of the ventilator after one day.  He was taken completely off of oxygen after 4 days.  He began taking a bottle after 2 weeks and was taking all of his food by bottle after 3 weeks.  He was cleared by the doctors to come home on May 15th after just 4 weeks – and only 35 weeks from conception.  To put that in perspective, if Kim had gone full term with her pregnancy, Dylan would still have had five weeks to go when he came home!

Josh’s story has not been so happy.  Within hours of his birth, he began to have breathing difficulties even with the ventilator, and no setting or placement of his breathing tube seemed to make much of a difference.  He had several episodes a day where he had to be helped with his breathing by a technician squeezing a bag of air, and on three occasions they had to call a code and palpate his heart.

Josh was diagnosed with a serious condition called tracheomalasia, which is a floppiness of the cartilage in his throat.  There is no treatment for this condition other than to try to keep the baby stable while he grows out of it.  Typically it takes up to two years for that to happen, with the first two to three months on the ventilator.  Josh’s condition was so sensitive that they had to keep him sedated and paralyzed to prevent any movement that could jostle his breathing tube.  So, when we went to see him, he could only lie there completely still – no movement of his fingers and toes, eyes shut, completely still.

About three weeks ago, the attending neonatologist decided to ask an Ear, Nose and Throat (ENT) specialist to perform an in-depth scope of Josh’s throat.  They had not wanted to risk the procedure earlier because it entailed taking him to the operating room and extubating him, which was risky given his condition.  Fortunately, CHKD has some of the best pediatric ENT specialists in the world, and Josh came through the procedure without incident.  More importantly, though, the scope showed that Josh did not have tracheomalasia!  Rather, Josh was born with his airway closed about 90%.  The doctor was able to perform a procedure on the spot that opened it to about 50%.

Josh thereafter began to breathe a little easier with the help of the ventilator, and they were able to take him off of the paralytic.  He remained sedated, but for the first time in his life, we were able to see him make small movements with his hands and feet – and for the first time, he opened his beautiful little eyes and looked at us when we spoke to him.

Last Tuesday, the ENT specialist did another scope.  This time, the doctor was able to see that Josh had a ring of cartilage in his throat that was obstructing his airway, and the doctor was able to fracture that ring and open Josh’s airway to about ninety percent.

Over the past week, they have been slowly weaning Josh down on his ventilator so that he can learn to breathe unassisted, and they have been slowly weaning him off of the sedation medicine.  As of today, he remains on the ventilator and sedated, but the doctors expect him to be off of the medication and extubated within the next few days.

The most special moment came today, when Kim and I each got to hold our son for the first time.

Words cannot sufficiently express our deep gratitude for the incredible doctors, nurses, technicians, and staff at CHKD.  Throughout this experience, the doctors and nurses have taken all of the time that we have needed to explain to us what was going on with Josh, what they were doing to address it, and what we should expect going forward.  They patiently answered all of our questions.  They took our phone calls or called us back if they were immediately unavailable.  But most of all, they treated our son with as much care, respect, and love as we would have given him if we could have taken him home.

When they were taking Josh for that first risky ENT scope, Kim and I were there walking with the doctors and nurses toward the operating room while each doctor, nurse, and technician introduced himself or herself and explained who they were and what they would be doing.  As we were walking down the hall, someone walked past us pushing a newborn baby in a cart.  Three of the nurses that were with us stopped to look at the baby and fawn about how cute he was.  I remarked to Kim that I was amazed that these nurses, who do nothing but take care of babies day in and day out, still noticed and were touched by how cute an individual baby was.  Those are the kind of people that I want taking care of my son.

CHKD is a true Virginia treasure.  I have told the nurses and doctors that the only reason that Kim and I can sleep at night is that we know that Josh is in such good, capable, and loving hands.  I meant it.  Nothing means more to me than my children, and the wonderful doctors, nurses, technicians, and staff at CHKD have earned my everlasting appreciation, respect, and gratitude.

Because of these wonderful people, today I was able to hold my son for the first time.  And soon, he’ll be coming home.