CHRISTIAN’S FIRST FEW WEEKS
Christian Lee Roberts was born on
Tuesday April 9th,
2002 at
10:04 pm. He weighed in at
6lbs 3oz and he was 19 inches long. Christian was born at Denton Regional
Medical Center and was soon transferred to Cook Children’s Hospital in
Fort Worth,
TX. Initially Christian’s condition was stable with
slightly labored breathing. X-Rays were taken and they determined that
Christian had a Tracheoesophageal Fistula, meaning that his esophagus was
attached to his trachea. Had they not caught this so soon he would have
aspirated everything he swallowed. Within 13 hours Christian had his first
surgery to repair his T.E. Fistula. Within the first 24 hours Christian was
diagnosed with CHARGE Syndrome. His initial exam showed he had a few
characteristics of CHARGE, later evaluations would determine what other features
he had. Within a few days of surgery Christian moved sides in the NICU to the
less critical side, known as side B. Now the only thing holding him back from
going home was eating. They didn’t start oral feedings until one week after his
surgery. Once they did start Christian struggled with oral feedings, he
wouldn’t suck at all and he coughed every few seconds. After 2 days of
struggling with oral feeds the doctors decided to do a swallow study. It showed
that Christian was aspirating what went down, then refluxing and aspirating what
went up. Our options were to put in a gastric tube and a fundoplication or stay
in the hospital with a Nasal gastric tube until his swallowing dysfunction got
better. At this point we just really wanted to bring him home, so we opted for
the G-button and fundoplication. At this point Christian was 2 weeks old.
During his last week at the hospital Christian’s eye exam showed he had
Microphthalmia and Coloboma in his right eye. He failed his hearing test which
can be inconclusive; therefore we will follow up with an ABR (auditory brainstem
response). We made follow up appointments with a Cardiologist, a Nephrologist,
as Christian developed high blood pressure after his 2nd surgery, a
Neurologist, a plastic surgeon and a geneticist. On May 1st, 3
weeks after Christian was born we were able to bring him home. YEA!!!!
CHRISTIAN'S FIRST YEAR
As most CHARGE parents will say the first year is VERY
difficult, and we are hear to agree at the very least you could call it
difficult. We started out with dr appointments every week, sometimes up to 7 a
week including therapies. When Christian was about 6 weeks old the ABR showed
that Christian had a profound hearing loss. At about 3 months old he had tubes
placed in his ears and 2 more ABRs concluded that he did have a profound hearing
loss. At 4 months old, and to the astonishment of his general surgeon,
Christian’s swallow study allowed him to be released on trial baby foods. Then
he was released on ALL solids at 8 months old. When he was 9 months old he had
explorative ear surgery that ended in removal of one of the bones in his ear and
granulation tissue. His ENT also concluded that he had had a chronic ear
infection that likely cause irreparable damage to his facial nerve. Right
before he turned one Christian started crawling, a major milestone in our
eyes!! As his birthday present his final swallow study showed no aspiration of
liquids or solids. Shortly after his first birthday he had his hole repaired in
his soft palate and new ear tubes placed. Just 2 weeks later he received his
cochlear implant. These were Christian’s first 13 months condensed. At the end
of these 13 months our greatest challenges were eating, we really were for the
first time allowed to push all foods his direction; communication, Christian
started signing at 10 months old, and we really want to continue to push
communication with sign language; gross motor development, Christian was still
very floppy, he crawled but military style and he still had a difficult time
sitting up. At this stage we were being followed by an ENT, a Cardiologist, a
Nephrologist, a geneticist, an Ophthalmologist, an eye prosthetic specialist, a
plastic surgeon and a gastrologist.
CHRISTIAN TODAY, 4 YEARS OLD
Wow, it is so fun to look back and see how far Christian has come and get excited about all the possibilities in the future. Since his cochlear implant at 13 months, Christian has had only 2 more surgeries. He had another explorative ear surgery at 2 ½ years old that removed granulation tissue. At this time we had another ABR that showed no hearing in the non implanted ear. Just weeks later he had dental work done that ended in removal of a top tooth and capping of 3 other top teeth. Due to the facial palsy Christian has a hard time removing food from behind his teeth; therefore it sits causing decay. Also, medically Christian was dealing with around the clock temperatures from fall 2004. In January he was diagnosed with Asthma and in February an immune deficiency test proved he was lacking the pneumococal antibodies. In February he ended up in the hospital for the first time beside surgeries since his NICU stay. The final diagnosis was a viral infection in his lungs. After 2 weeks in Cook Children’s Hospital he was released. In May 2005 we started Gamma Globulin Infusions. The infusions have really helped us fight infections that could send us to the hospital, we still get infections that cause fever and end with antibiotics, but not as often as before. Christian is still very tiny, only 21 1/2lbs and 33 ½ inches. It doesn’t seem to matter how much he eats, he just won’t gain weight. Our last appointment with the endocrine doctor revealed our need for growth hormones based on the fact that Christian is only growing at 2 inches a year. At that rate his max height would be around 4 feet. We are scheduled for actual growth hormone testing this summer to determine our deficiency.
From a developmental perspective we are so proud of Christian and all he has accomplished. He is signing about 350 words, putting together short sentences. He has been walking independently since September 2005 and gave up his walker in October 2005. He is eating really well; he loves cheese sticks, pizza, ice cream and peanut butter sandwiches. Currently he is eating by mouth most of the day with tube feeds at night. Due to his facial palsy he isn’t able to drink enough liquids for hydration, or for caloric intake. Soon after Christian started walking he also started listening and repeating sounds using his Cochlear implant. He now responds to many different sounds and has figured out where many of the sounds are coming from. He even will repeat sounds like aaahhh for airplane, or up up up, or dooooowwn. We are so excited to see where his new language developments are headed. Christian is attending the Regional Day School for the Deaf at Ann Windle in Denton. He rides the bus every day and LOVES it. He had a very difficult transition into school. Some days he does amazingly well and other days he is quite a difficult child to handle. Christian has very high levels of stress and frustration and there are days when he just doesn’t want to cooperate.
It seems like when we have things figured out something new pops up. Life is so much easier than it was even 2 years ago, and we feel so blessed by all of Christian’s accomplishments. Even still there are new things to come. We are anticipating another cochlear implant for his right ear. We are waiting for his next CT to show his lungs have cleared enough to risk intubation. We will continue the IV infusions for 2 years and see if Christian’s immune system matures enough to go off of them. We are planning on a massive surgery, our biggest yet, to fix Christian’s facial palsy. That will likely take place in 2007 or 2008. We meet with the doctors this summer. I am sure there are many other plans God has for Christian that we are not privy to. We will definitely keep you updated.
