Decker, Brian

Last fall I was given your name and address by Dawn Torrence of Cherubs, as parent matches. For many reasons, I have not had the time to contact you until now -- it's on the top of my New Years Resolution List of "things to do"!

Frankly, when I first received Dawn's informative newsletter I was stunned and sickened; it stirred many memories for me that I had long since buried in the gray matter of my mind. It was disturbing to relive the nightmare -- and to realize that others were enduring the same hell.

I am the mother of a young man who will be 21 years old in April. Brian was born with right-sided diaphragmatic hernia and bilateral phrenic nerve agenesis. While the hernia was repaired on the day he was born, the lack of functioning phrenic nerves left him with no functioning diaphragm He was subsequently hospitalized in the NICU for two years. We brought him home with oxygen, G-tube, ventilator, tracheostomy, etc., etc., etc. Getting the hospital staff to release him was a major battle; remember, this was almost 20 years ago -- before home health care was universally accepted.

It would be impossible for me to share every detail without writing a book (and someday I might just do that). I would like to share some highlights that, in hind-sight, I feel are major considerations:

Get your child out of the hospital and into your home as early as possible. Get involved in the care while he/she is still in the hospital. Learn, ask questions, demonstrate hands-on involvement!! Prove that you are concerned and qualified to care for your child at home!

Speak up -- speak out!! Your child cannot speak or defend himself/herseld -- you must be their voice! Don't be intimidated! Be assertive, but speak calmly and clearly, always with a "please" and "thank you".

Begin feedings by mouth as early as possible. To this day, Brian will consume nothing but water by mouth, and receives nutrition via G-tube. He remains very oral sensitive, and anything with flavor or texture he finds offensive and will gag vigorously. We have tried everything imaginable to encourage oral feedings through the years -- all in vain!! I have come to the conclusion that it is a behavioral thing -- he finds it time consuming to sit and eat; it is much less work to hook himself up to a feeding pump at night before he goes to bed. Because he has never developed those facial muscles for mastication, his oral cavity is maloccluded with flaccid nusculature, resulting in numerous periodontal surgeries, orthodontic work, years of speech of speech therapy, and continued "lazy" speech patterns because of the untoned tongue, lips, and cheek muscles. Be aware that while liquid tube feedings may be nutritionally "complete" in content, they may have side effects when used solely and over a long period of time. At age 5 Brian developed symptoms related to gallbladder disease. Further tests revealed gallstones, a result if his diet. He had his gallbladder removed, and because of complications resulting from failure to recognize the musculature involved in his breathing process per the DH repair, when the sutures were removed one Thanksgiving morning, his entire incision opened, pouring his abdominal contents into his lap, returning him to the OR and subsequent ICU stay-- an absolute nightmare!!

Get your child involved in activities with other children as early as possible. Brian was in a pre-school program at age 3, and then on to regular public school kindergarten, grade school, etc. While children can be brutally honest, and often cruel, through instruction and education, acceptance will result.

Consider the need for supplemental oxygen during periods of sleep and exercise. Through a sas series of errors between physicians, this information was never relayed to us and as a result, Brian has developed pulmonary hypertension, a serious, life-threatening complication of hypoxia. He is now maintained on oxygen 24 hours a day and must use a rocking bed or BiPAP machine for non-invasive ventilator assistance. He was not able to attend middle school and most of high school, but his senior year was stable enough to attend classes and walk across the stage (as a member of the National Honor Society) on graduation day to receive his diploma -- his goal!!

Today Brian is in his second year at our local university, driving to school each day, throwing his oxygen unit in his back-pack. In the first months of his life, physicians encouraged us to "pull the plug", saying he was blind, deaf, and probably severely retarded -- if they could see him now!! His battle is certainly far from over. Each day is a gift and I feel he lives a happy life. It provides some solace to me to realize that Brian has never known any life different from the one he lives each day. Every breath is an effort, but that is the way it has always been for him, so he doesn't know what "normal" really is -- so his struggle to survive is "normal" to him. I would be happy to share any thoughts or ideas with you and hope you will feel comfortable contacting me. I have learned to take one day at a time; we have good days and better days. You must take care of yourselves as parents -- you are the caregivers. Stay well and strong! I hope to hear from you soon!



Written by Brian's mom, Debbie Decker (Ohio)
1996

Brian has inspired us greatly!!!!
What a wonderful and brave young man. God works in so many ways and this to me is a miracle! How is he doing today?

Thank you for your inspiring story and much needed guidance. My husband and I found out on the 15th of September that our little baby boy has RCDH. We live in NV so were referred to UCSF. Which we have an appointment with them on the 30th. After speaking with one of the nurses at UCSF, she informed us that our referring doctor thought that instead of RCDH she thinks it may be bilateral. Which after doing lots of research, we found out that the bilateral is extremely rare and not much chance of survival.
This is all such emotional news considered just 6 months ago we were told we couldn't have kids, now being told that our son has CDH.

I found your story so inspiring. Thank you for that. You give us hope. We know that these news months are going to be trying, but that the living years will be even more trying.
If you have any other updates or guidance, we would love to hear it!

Unfortunately, Brian lost his fight with CDH a few years ago. His family hasn't updated his medical information or told us what happened. It was a sad loss to us all. :(