My youngest, Desirae, was born with a left-sided diaphragmatic hernia. She is 3 months old now and doing well. I am wondering if there are any CDH moms in the portland area that can share what they have gone through as their child has grown older. I am wary of what is in store for my daughter and a little scared that she may have many trials and tribulations. Thank you in advance for sharing. God Bless.
~ S. B
Hello,
I'm sorry but I'm not in Portland.
I would still love to chat with you.
My son was born with CDH and just turned 2.
Please feel free to email me anytime.
~T.
I am! Unfortunately I'm not in Portland, I'm in Hawaii (from CA, but we're a military family). Anyhow, my cdh daughter will be 12 in 2 weeks! I was 17 when I had her, fresh out of HS & it was a very rough time. You can email me at ____@____.com, or call anytime...just email for my number. Any questions specifically? -A.
Hi S.,
My name is D.. My son was born Nov.4 2004 with a rcdh. Unfortunately he did not survive, but I am part of a support group of only mommies with cdh babies. Some survivors some not. But they are a great group. It will put u in contact with some cdh survivor mommies. If your interested send me an email: ____@____.com this helps.
Big Hug,
D.
I AM NOT IN YOUR AREA, BUT SOMETIMES ANYONE WHO CAN EMPATHIZE WITH YOU IS GOOD, SO HERE'S CONNER'S STORY. MY SON WAS BORN WITH A VERY RARE DISEASE, CONSISTING OF FIVE BIRTH DEFECTS, ONE OF WHICH BEING A RIGHT SIDED DIAPHRAGMATIC HERNIA. HE WENT THROUGH NUMEROUS SURGERIES, AND CAME HOME AT NINE MONTHS OF AGE, BUT ON LIFE SUPPORT. HE WAS ON A VENTILATOR WITH A TRACH, FEEDING TUBE, VP SHUNT, AND MANY OTHER HOOK UPS. BECAUSE OF HIM BEING SO SICK AT BIRTH HE WAS SEVERELY DELAYED. I GOT HIM PHYSICAL THERAPY OT, AND SPEEECH FOR SIX YEARS. HE CAME OFF HIS VENTILATOR WHEN HE WAS FOUR, AND HE HAD HIS TRACH REMOVED AT FIVE, AND HAD HIS FEEDING TUBE REMOVED JUST 3 MONTHS AGO. HE WILL BE SEVEN ON APRIL FIRST. HE ATTENDS PUBLIC SCHOOL, HAS NO NEUROLOGICAL PROBLEMS, BUT STILL REQUIRES PHYSICAL THERAPY AND SPEECH. HE HAS COME SUCH A LONG WAY, AND HE CAN DO MOST THE THINGS OTHER KIDS CAN. HE IS VERY SHY AND RESERVED, AND BECAUSE OF THE HERNIA CANNOT PLAY SPORTS WELL, ATLEAST THE REALLY ACTIVE ONES. HE STILL FIGHTS ASTHMA, BUT IT HAS IMPROVED GREATLY. HIS RIGHT LUNG IS HYPOPLASTIC, DOES NOT MOVE, AND HIS LEFT LUNG IS UNDERDEVELOPED AND HAS CHRONIC LUNG DISEASE. HE WILL ALWAYS HAVE TO DEAL WITH HIS ASTHMA AND HIS INNABILITY TO PARTICIPATE IN EXHAUSTING SPORTS, BUT HE'S HERE, HE'S HEALTHIER NOW THAN HE HAS EVER BEEN, AND WE LOVE HIM. MY BEST ADVICE TO YOU IS TO NEVER GIVE UP ON ANYTHING, IF THEY TELL YOU YOU CAN'T DO IT, ATLEAST TRY. NEVER BE AFFRAID TO GET A SECOND OPINION, YOU ARE YOUR CHILD'S ONLY ADVOCATE. THE DOCTORS IN THE NICU TOLD ME TO TAKE MY SON OFF LIFE SUPPORT AND LET HIM GO WHEN HE WAS 6 MONTHS OLD, WE TRANSFERRED HIM TO ONE OF THE BEST CHILDREN'S HOSPITALS AROUND, WE'VE MOVED SEVERAL TIMES TO BE BY WORLD RENOUN DOCTORS, AND WE HAVE TAKEN HIM TO CLINICS IN OTHER STATES FOR TREATMENT. THEY TOLD ME MY SON WOULD NEVER MAKE IT THROUGH THE SURGERY, AND NOW HE'S TURNING SEVEN! AND JUST TO SEE HIM DOING THE THINGS HE DOES NOW REASSURES ME I DID THE RIGHT THING, AND ALL THE WORK THUS FAR HAS BEEN WORTH IT. IF YOU FIND PEOPLE IN YOUR AREA TO HELP SUPPORT YOU GREAT, BUT IF YOU EVER NEED TO TALK, OR VENT EMAIL ME. TAKING CARE OF SPECIAL NEEDS KIDS IS TOUGH, IT ALWAYS HELPS TO KNOW OTHERS ARE OUT THERE TOO. ____@____.com
