Learning to live with VATER Syndrome
My daughter Angel
Introducing my story
My name is Lisa, I am a mother of 3 and my youngest is 7. She was born with Vater Syndrome. They also call her condition Sacreal Agenisis or Caudal Regression. These are all big words that mean my baby is really complicated. When She was born she had a Tethered Spinal Cord, A horseshoe Kidney and one that did not work, An impreforated anus and a heart murmur, WPW( a heart condition) and a peanut bladder. With all of this we spent many days and nights and at times weeks and months in the hospitals and doctors offices. When she was born we had no idea what our journey ahead was to be. Within a few hours of birth they were rushing her off to surgery for a colostomy as he feces and urine were mixed together. This was terrifying for me. I am so thankful for my hubby(Angels Dad Ray) he was not scared to hold her or learn everything she would need. I on the other hand was scared and shaky and afraid I would hurt her when I held her. Well times have changed when she was about 3 weeks old I got over it and decided the best way to be a great mom to her would be to listen to the doctors and nurses and learn from her what would make her comfortable. Well now that she is almost 8 we are buddies.We do everything together.
So there are so many things I would love to share with you all and I am hoping that people will feel confident to come to me with questions as I have had the opportunity to learn so much.
For Angel's first few years of Angel's life she had a colostomy. I learned the so much about skin care from this experience. When Angel was 3 she had her colostomy reversed. This was a miracle. Although we did not know the problems that would arise. Now that Angel's insides have been reconstructed she became severely incontinent. This experience led us to Bowel Management which has been a Godsend! For almost three years Angel had no ability to hold it and she had leakage all day and night with diaper changes ranging from 20-40 times a day. There was so much skin breakdown that we constantly went to the doctors and saw wound care specialists. This was very hard on us and her as the whole day was spent dealing with these issues.And without saying the constant pain Angel had to endure. I am so thankful that my oldest daughter who is now 18 embraced the opportunities to learn and help us with Angel. As there was not much time in between changes for all the regular big sister things. Angel also has a brother and he is 12 so he has not been able to aid in her health care as he was just a little guy when she came into the picture. He does however carry the position of big brother and playmate. So trying to take Angel to all of the places people usually like to take their little ones was not always such an easy task.Bowel management has given us a whole new sense of a day out at the park and is not restricted to bathroom facilies.
For the last Four years Angel has been on dialysis. She goes three times a week for 4 hours. I believe that is a pretty standard dialysis treatment schedule. Although this is difficult on Angel sometimes, she never ever complains about going to treatment. She also attends school during dialysis treatments via a homebound teacher who comes to the dialysis unit. Angels health has been very stable for the last couple of years. Back in 2008 she had a failed transplant and we are waiting for some growth before we attempt that again. That was a very difficult time for us all. Aside from the dialysis and daily bowel treatment we try to live a normal life.
As Angel gets older she is able to understand her disabilities a lot more and has learned to enjoy her life even though she can't do what some of the other kids can. Like swimming. This has been a little hard as we live in Florida and it's really hot in the summer time. Angel has a dialysis catheter so she is not able to get the dressing wet.Sometimes we can get special permission from her doctors to put tagaderm on top of her dressing to allow her to get splashed with out her actual dressing getting wet. We take her to our local waterpark and we have gotten permission from the managers there to use the baby tubes in the regular area so she can sit in the pools and only the bottom half gets wet. This really makes Angel happy as she does not get to enjoy it too regularly. If her line gets wet she could get very serious line infection and blood infection so we do that sparingly.
I would like to share with you all some of the things that I have learned and find helpful so feel free to scroll through this site and take out whatever you can that might help you or your family. If you would like to contact me direct please feel free to leave your email in the comments section.
I have learned about how to keep the skin from breaking down and what to do when it does break down. There are so many different products on the market that it's possible that every person would need a different remedy. What I found is if the skin is open and wet no cream no matter how good it is will stick to the skin.This brings me back to what we learned from the days of the colostomy bags.Clean dry skin is best to work with. If the skin is very moist and you can get your hands on no sting barrier wipes or in the pharmacy you can find a product called liquid bandaid(is very inexpensive) and a product called stomahesive powder this will really make a difference.First apply the barrier wipe or liquid bandaid wait for it to dry and then get your powder and pouf onto the skin, I would let all the powder go to the bottom of the tube and just pouf the air and small drops of the powder will start to adhere to the wet open skin. Once you have a small covering you will be able to apply your choice ointment. I like to use Zinc and also like a product called Sensicare. We have tried many different creams and mixes of creams and I find that the Zinc gave us the best results .
Kidney Action Day Atlanta 2011
Sites that you will find helpful
- American Kidney Fund (AKF) - Reaching Out, Giving Hope, Improving Lives
The mission of the American Kidney Fund is to fight kidney disease through direct financial support to patients in need; health education; and prevention efforts.
- Vater Syndrome
Vater Syndrome Information - Everything you need to know about Vater Syndrome.
- What Is V.A.T.E.R. Syndrome?
A definition of V.A.T.E.R. Syndrome, with links to more information.
- VACTERL or VATER Association, Cincinnati Children's Hospital Medical Center
VACTERL (VATER) Association causes defects, heart problems and prognosis from the Heart Encyclopedia by Cincinnati Children's Hospital Medical Center staff.