Taylor and Brianna, My Girls, are very special... and both have very special needs. You see.. Taylor has Dwarfism, Pseudoachondroplasia to be exact. Try saying that without googling how to say it! We didn't know when she was born that she had it, we found out when she was almost 2 and started walking, yes she started walking very late. I noticed she developed a duck like waddle when she walked and her limbs (arms and legs) were starting to look different, so I took her to the Pediatrician. She sent us to Texas Scottish Rite Hospital for Children where we got the diagnosis. They also informed me that I had a 50% chance of having another child with the same diagnosis. In all honesty, I was devasted. I had no idea what Dwarfism meant, I had no idea what to do or say. I was in shock. I remember asking myself and God what I did wrong and Why MY child. I was scared.
Fast forward.. 2001 Taylor turned 3 and I just had another baby girl! My happiness was overshadowed by the looming knowledge that this child too could have Dwarfism. When Brianna was born she was born with what they call a Anal Rectal Malformation, in English.... her rectum was in the wrong spot. We thought, oh well, no big deal we will have a quick surgery, move the rectum and all will be fine! BOY were we wrong!
We were sent to Cook Childrens Hospital when Brianna was just a few weeks old and told that yes we would be having surgery. Within the same few weeks we were told that Taylor would be having surgery as well, to straighten her legs. Her dwarfism causes her legs to "bow" out causing a "waddle" when she walks so this has to be periodically corrected with surgery. Just had the 3rd surgery and going for the 4th this April.
Anyways, Brianna had surgery in January of 2002 to move her rectum, we went home after a day or two in the hospital. Then we noticed she started having stool coming through her vagina. We rushed her back to the hospital and were told she had developed a rectal vaginal fistula, a hole between the two, and it had to be repaired immediately. So, they did another surgery to correct it, sent us home after a day or two and it started all over again. We went back to the hospital, this time they admitted us for a while, they tried to correct it again, it still didn't hold then the Dr said we have no other options.... We have to do a colostomy to let it heal on its own. WHAT?!?! A "colostomy"?? So, we got our lovely colostomy. We stayed in the hospital about a week, learning how to change the bags, clean the stoma etc etc.
One week after we left the hospital with Brianna, Taylor had surgery. Her surgery involved cutting out a portion of the bone in her lower leg, putting it back in and holding it in place with metal screws then casting both legs for 6 weeks. I seriously gained some major muscle in those 6 weeks. While tending to Taylor in the hospital, I also was changing colostomy bags for Brianna and watching for infection in her incision, which she did get. We went home, casts, bags and all! Brianna kept her bag for 6 months, Taylor kept her casts for 6 weeks, I much would have rather had the bag for 6 weeks...
WHEW! We thought we were done!! Wishfull thinking maybe? 3 years later Taylor was 6 and had another surgery on both legs, then 2 years later had another surgery... on just one leg this time. Have you ever tried lifting a 70 or 80 pound child with 2 casts on? Let me tell ya... It ain't easy! Even with just one cast, it ain't easy!
In April of 2010, Brianna had another surgery because she was developing Rectal Prolapse which was causing her to have leaking of stool. This was supposed to be a simple procedure and once done, she would be fine and should have no problems. I think they forgot who they were dealing with... This was an in and out day procedure and the next day her incision tore apart. A huge gaping tear. We took her back in and the Dr said there was nothing he could do, it had to heal on its own. Well it kept getting bigger and he kept saying "It will be OK", I kept saying "No its not, this is not normal" but I'm not a DR so I had no grounds to stand on. Time went on and she was not healing, in fact she was only getting worse. She lost all bowel control and her rectum was a constant open hole so you can imagine what was happening.
I took her back to the surgeon time and time again and on the last visit he said "You know, she was born like this, so this is something she is just gonna have to deal with for the rest of her life" WHAT!?! I DON'T THINK SO!! She had a working rectum before the surgery, why not now?? That was the last visit to that Dr and my husband and I set out on a mission... A mission to find help for our little girl. My Boss, a Family Doctor, did research and found a world renown Doctor in Cincinatti Ohio at Cincinatti Children's Hospital. From our understanding if anyone could fix our daughter, this man could. My husband and I took 2 weeks off of work, and set out on our journey to get our child fixed! We drove to Cincinatti Ohio from Texas, the Doctor did a procedure on Brianna and informed us that he could not fix her AND she had something wrong with her bladder as well. WOW! Talk about total devastation! We spent another week in Ohio trying a bowel management program, in hopes to keep her clean with no soiling, the program did not work for us. We drove back to Texas deflated.
We met with a local Colo rectal Specialist this past week in hopes that maybe just maybe he could help us, he gave us the same response. We have been told so many things as to why Brianna has no bowel control... She was born this way (which she was not, it happend after the last surgery), to much scar tissue (which the last Doctor says he does not think is the cause) and the latest... Her rectal muscles are just not working. Can you imagine the devastation Brianna is feeling? The humiliation, the embarrassment, her self esteem has gone way down.
Anyways, this is the history of my girls and in a later post I'll feel you in on our daily living! Oh by the way, Brianna does not have Dwarfism, we beat those odds!