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My two day old grandson was born with diphallia, which only occurs in 1 in 5 million births. He also has imperforate anus, horshoe kindney and severe scoliosis. Looking for any info I can find.
My two day old grandson was born with diphallia, which only occurs in 1 in 5 million births. He also has imperforate anus, horshoe kindney and severe scoliosis. Looking for any info I can find.
I'm sorry I can't give you any information, but I wish I could give ya a hug!! I'm sorry to hear of the medical problems!
Congratulations on the birth of your grandson! I understand that the news about his congenital problems is scary and overwhelming, but I hope you can also focus on all that is perfect about him. My daughter is 19 and was born with VACTERL Association which has some similar diagnoses as your grandson.
I am also the Executive Director of Pull-thru Network (PTN). We are a support group for families, children, teens and adults who are dealing with anorectal malformations such as imperforate anus and the various associated diagnoses (urological, cardiac, orthopedic, etc). Many of our children have a combination of problems similar to your grandson. Pull-thru Network has over 1000 members from all across the United States and in 22 countries around the world.
Our website is www.PullthruNetwork.org
Please let me know if I can answer any questions or be of any additional help.
Bonnie McElroy
Pull-thru Network
205-978-2930
PTNmail@charter.net
I can provide some information for you about imperforate anus.
My son was born in August of last year with VACTERL Association. One of his "issues" was an imperforate anus. I will focus on his treatment of this particular issue for you.
He received a colostomy bag within 7 hours of being born. He had what was considered a "high lesion", meaning that his anus ended somewhere his L3 vertebrae.
He had his pull-through (PSARP) (where they "built" his anus) when he was 8 months old, and then they reversed his colostomy when he was 10 months old.
It all seems so long ago now, but if you're interested, we kept a blog online beginning with the day he was born, and I would be happy to share it with you.
We found a lot of support from the Pull-Thru Network, and there is also a group, IA Parents, on Yahoo Groups.
Congratulations on the birth of your grandson! I know that everything seems scary right now, but just know that a year from now, you will probably look back in amazement at how far he has come, and how much your family could handle that you never would have imagined possible! Children have unbelievable strength. My son's resilience and stubbornness never ceases to amaze me!
MY friend is I were to have a son your Grandchild would be it. I have everything he has and am 40 years old right now. Obviously I do not have diphallia but I have the female equivalent - I am didelphyic. My screenname is what it is because I have found that I am missing some parts and have additional later on. Most of my conditions were not found until later in life - except the scoliosis. I do not have imperforate anus but I will tell you why your grandson probably does. He may be missing vertebrae in his spine - this is common with horseshoe kidney though it is also not well published or well known within the medical community. A researcher at (I believe) Boston Medical discovered the correlation about seven years ago. There is also a lot of gynecological deformities with female horseshoe kidney members. I have survived most of my life not even knowing about the kidney issue or the dideplhia. The scoliosis I knew about and was treated but an awesome doc in NYC that is at the forefront of scoliosis research. He practices at NYU Albert Einstein School of Medicine. His name escapes me right now but I can find it if NYC is an option for you. I am also not sure if he is still in practice or if he retired. I was treated with what they called the Zimeckle brace (spelling may be off) and the results were fabulous. I would caution about back surgery unless they map out the whole kidney first! (Horseshoe kidney is normally fused somewhere in the back so you want to map out everything before you start playing around in the back area. They may think there is another issue if he is not feeding correctly. This may be becuase it hurts for him to drink. Try giving him smaller more frequent feeds. Drinking did/does hurt for me and they just thought I was collically. As I got older I drank very little, as it hurt but not knowing any difference I never said anything. Eventually this "habit" of not drinking lead to kidney stones and gout - hence my problems were discovered. May sure you teach him the art of sipping as an infant so that hydration stays prevalent with him. They say to be careful of contact sports - I never did and even as accident prone as I was nothing ever happened. So I would be cautious but no need to wrap him in a rubber corset either. Good luck and please feel free to contact me with any questions, I will see how I can help.
By the way - i know an excellent pediatric nephrologists and urological restructuring surgeon in NYC - again if NYC is an option.
Just wanted to see how your grandson is doing. Please post when you get a chance. My prayers are with you and all the new family.
THANK YOU SO MUCH FOR YOUR SUPPORT AND BLESS YOU FOR REACHING OUT WHEN YOU HAVE UR OWN CHALLENGES. PHOENIX IS STILL IN THE HOSPITAL AS HE IS HAVING TROUBLE SUCKING AND BREATHING AT THE SAME TIME...THIS MAKES HIM EXHAUSTED AFTER ONLY A SMALL AMOUNT OF MILK. HE WILL FACE HIS SECOND SURGERY NEXT MONTH TO TRY TO ATTACH HIS BOWEL TO WHERE HE SHOULD HAVE AN ANAL OPENING AND THEN TRY TO MAKE ONE FOR HIM....HOWEVER....EATING IS THE FIRST PRIORITY. HE IS SO BEAUTIFUL AND WE ARE LOOKING AT THE SUM OF WHAT A MIRACLE HE IS INSTEAD OF LOOKING ALL HIS POOR LITTLE MIXED UP PARTS.
HAPPY NEW YEAR TO YOU AND THANK YOU SO MUCH FOR YOUR KIND AND OPEN RESPONSE...YOU GIVE ME A LOT OF HOPE! HAPPY NEW YEAR...WILL UPDATE AGAIN SOON.
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