Subscribe to:
Post Comments (Atom)
For talking about how it feels to be a kid with bladder extrophy and associated disorders, and how it feels to be their parent or sibling. In our own words and for each other.
For talking about how it feels to be a kid with bladder extrophy and associated disorders, and how it feels to be their parent or sibling. In our own words and for each other.
7 comments:
When my son was born with exstrophy, it was without warning. The disorder was never detected through prenatal testing and was a complete shock. My pregnancy was happy and healthy. The delivery was normal up until the point when my OB said, "What is that?" Honestly, can you think of a less tactful way to handle the surprise than that? The second thing she said was, "Page the neonatal pediatrician immediately."
A little bit of time passed while we waited to find out what it was. It didn't help when they told me because I had never heard of bladder exstrophy before. I hated having to make decisions about surgery without information. Luckily, my mother worked in a hospital and she talked to every doctor she could find and called me to tell me what they said. My son was transferred to Children's Hospital within hours of his birth. I remained in the hospital where I gave birth to him for the remainder of the night.
For the first hour without him, I cried and I asked, "Why did this happen to me?" I wondered if I was being punished for past indiscretions or misdeeds. But after a short while, I realized that it wasn't about me, that it was about him. My instincts to protect him started to kick in and I started to demand to be released ASAP so that I could get to him. I had to get there and I had to get there fast! They didn't argue and I was back with him the next morning. And I've tried to be there since.
Over the years I've made mistakes. There were a few times when my sons doctors asked me to leave the room so that he wouldn't associate a negative experience with me. But when I heard my son screaming, I couldn't stay away. Once, I allowed a doctor to convince me to allow him to put a stitch in my sons belly without anesthesia. I will never make a mistake like that again. From our medical experiences I've learned to always be standing next to my son and to always insist on pain management - even if it means the doctor will have to wait.
My hopes for my son are simple. I want him to live without pain, which he does most of the time. I want him to live without fear and without shame, which he does most of the time. I want him to grow up to be anything he wants and I want him to have the confidence to know that he can. If he wants a wife and children, I hope that he will have them.
Mostly I just want him to be happy, which can be difficult for him. He has a hard time being different and can be very negatively affected by it. As he grows, it becomes more and more important to him to be "just like everyone else." I have always done my best to treat him like he is "just like everyone else." At least for now, this is the most important thing.
Like you Shannon, my son was born with BE, without warning. My son is 2 and a half yrs old and has a 5 year old sister. They are my everything and I am so lucky to have them.
As far as the experiences that we have had since his birth...he had his bladder closure & repair at 13 mo of age at JHH. Everything went great, aside from being away from my daughter and husband for 2 months. We have not really began "the next stage" as we are still working on going #2 in the potty. I feel my son is unaware of his situation at 2 and a half and his sister knows that he had a sx to fix his boo boo on his tummy. She knows that he will have more to endure as we sometimes speak about it to him and her. I don't think they understand....and I feel kind of stuck at this point, other than speaking about it from time to time - but not all of the time??? I think in my mind, I just take it one step (procedure) at a time.
My hopes for my son are the same as yours, you could not have said it better. We are several steps behind you and am not sure how to handle the next step, but I do have faith that things will happen as they should and will to continue to take things one step at a time. I commend you on what you are doing and think it is a wonderful idea.
I am the mother of a 16 year old son with bladder exstrophy. I also have 3 other children ages 20, 18 and 13. I, like most others was completely surprised to find out that my baby was born was exstrophy. I went from being shocked and sad to completely frustrated in no time. Within 15 minutes of his birth, I was told that my son had his bladder on the outside and would need to have surgery that night to repair it and that they may have to reassign his sex during the surgery...and oh, by the way, your going to need to just trust us that we are sending him to the best doctor for this disorder, because the transport team is on the way. I was completely blown away! Fortunately, the doctor called and talked to me before he did the surgery, and I insisted that they not reassign his gender. Thank god for at least that, because he really didn't do anything else right.
Before my son ever left the hospital, his incision had already started to come apart. At 3 months, his incision completely split open and his bladder came out. 2 Ambulance rides later we end up at the same hospital he had his initial closure at. They pretty much told us there wasn't anything they could do until he was older, because his bones needed to get stronger before they could pin him. We were told it was no big deal, just to push it back through the hole in his abdomen and keep it covered with Saran Wrap for the next year or so. I often thought of entering a contest for the most unique use of Saran Wrap! Now, I'm no doctor, or a rocket scientist, but this sounded like something less than scientific.
This whole thing taught me my most valuable lesson. Do your homework and research everything that you possible can, and trust your instincts as a mother. I asked repeatedly for information from this specialist and I was told that there wasn't any available. I decided to look for myself, and found out that he had several books at the hospital library about Bladder Exstrophy. When confronted about why he lied, he told me he didn't want me to get scared by the info that was published. He said the information was too depressing for anyone to read.
My husband and I then contacted Dr. Jeffs at Johns Hopkins and we immediately knew that we had come to the right man. He explained everything to us including the fact that by not doing the initial closure, our son's chance of having a relatively complication-free recovery were pretty slim. I felt betrayed by the first doctor for taking advantage of our ignorance when our son was born.
Dr. Jeffs was an absolute god send for us. He took care of our son for the next 5 years or so. After Dr. Jeffs retired, we continued our treatment with Dr. Docimo at Hopkins. A few years later, Dr. Docimo left and took a position at Pittsburgh Children's. We decided to follow Dr. Docimo to Pittsburgh rather than continue at Hopkins. I would confidently recommend Dr. Docimo to anyone.
As a parent of an exstrophy child, I must say that you have to assume so many roles in your child's life. It is the most frustrating thing I have ever been through. One of the most important roles that I have had to assume is patient advocate. My son knows he can absolutely count on me to make sure that everyone involved in his care is competent and will only look out for his best interest. I have zero tolerance for incompetence or for someone who dismisses me for just being a mom. When I tell you my son is in pain or that something is wrong, believe me and handle the problem immediately!
As I stated before, my son is now 16 years old and a sophomore in high school. Aside from a pretty nasty limp that he has from some problems from the second time they had to pin his pelvis when he was 4, you would never know he has a problem. People are always amazed to find out that he has had over 30 major surgeries, nine in the last 3 years. My husband and I have tried very very hard to raise him just like our other 3 kids. Our son has played competitive basketball since he was in the 4th grade. He is an avid skateboarder and pretty much an all over daredevil. We have never held him back. I don't ever want Bladder Exstrophy to become his identity or to define who he is. Yes, it sucks that he has exstrophy, but I do believe that it isn't what happens to you in life that matters, it's how you handle it that counts. I do not want him to feel like a victim.
With that being said,as we get further into the teen years, I do worry about the mental health as much if not more than then physical health. In the past 2 years our son started asking some questions about the exstrophy complex. I struggled with how much information I should give him. Will I freak him out if I give him too much info? What is it that he really wants to know? I decided to leave some books about exstrophy lay around the house, and if he wanted more info, it would be up to him to look it up. After a week or so, I noticed that he had been reading them in his room. I think in some ways, he feels a little more empowered by having more knowledge about what is actually wrong with him. He has talked with me about some issues, and I have given him Dr. Reiners email address and phone number if he wants to discuss more private issues with someone other than his mother.
There is a tremendous amount of guilt associated with being a parent of an exstrophy kid. Did I cause this... Did I make the right decision regarding his care..... Should I be concerned about his symptoms right now or am I just paranoid..... Will he hate me for letting the doctors insert a NG tube... Do my other kids feel left out at times when I am gone with him.... A whole lot of should haves, would haves, could haves go through my head when I try to sleep at night. I have to sometimes remind myself that I have done the absolute best that I can and there is no turning back, just moving forward. I am truly blessed to have such a well adjusted son.
As far as what do I hope for my son? I hope for the same exact things that I hope for my other kids... success, happiness, great health, and the self confidence and personal pride to achieve all of these things.
My college-aged son has been through numerous reconstructive surgeries, initially in Dallas at Baylor Hospital, then from age 7 on, at Johns Hopkins in Baltimore. There was a time in our lives when dealing with exstrophy was very much a daily part of our lives, but I just want to encourage you, and other parents of younger children, that it will get better! Most people have no idea of all that Chad has been through, and honestly, although I would never have chosen for him to go through this, the character and compassion it has produced in my son is something I would never trade. I could brag on him forever, for we are so proud of the young man he has become and are amazed when we look back at all that he endured physically through the years (surgeries, post-op care, lots of medications, etc.). In fact, the courage he has consistently demonstrated in facing various medical procedures has given me strength and courage to face my own treatment for breast cancer right now. He is an inspiration to me!
Our faith in Jesus Christ has been what has carried us through all these years! I can't begin to tell you the many miraculous ways God has provided for all we have needed each step of the way. Maybe someday I'll write a book about it! We've had the prayer support of literally hundreds of people and that has made the difference.
I have a 9 year old son with bladder exstrophy also.
When he was first born things were really hard. All the surgeries and all the worries. He is going in the fourth grade this year. Things are pretty "normal" right now. He goes to the bathroom every 2 hours, he takes sudafed for his bladder, he wears pullups to bed and goes for an ultrasound every 6 months. The doctor's office in the children's hospital is only 15 mins. away.
I have 2 older daughters. They think of him as everybody else. When he was first born he was in the hospital for 6 weeks. Luckily my mother and sisters helped me out with the girls. The summer he had his bladder neck reconstruction was another hard summer for them. My son spent the summer on the couch and I spent the summer taking care of him. I think it made all of us stronger people. The girls realized that things happen and we can't always do what we would like.
My son, Joey, loves to read, loves to watch and play baseball and play soccer. He doesn't feel sorry for himself and this is all he knows. We always treated him like we did our other children. I do feel very close to him though. I remember feeling sorry for myself and feeling sorry for him. I never let him know though.
When he finished kindergarten he had bladder neck reconstruction. It was a horrible summer. We went to the emergency room twice. He had the super pubic tube and the kidney tubes it seemed like forever. He was in pain and it was so hard to watch. By the end of the summer he had the tubes removed and he had to work on being potty trained. It was very frustrating for me and for him. He had doctor's appointments quite often. It seemed the surgery didn't work. He had physical therapy and biofeedback.
The winter of second grade he started to hold his urine. First for five minutes and eventually for 1 to 2 hours. It took a long time but it was worth it and is doing really good now. He still leaks a little but it doesn't bother him.
We have met 2 other boys from Connecticut with bladder exstrophy. We get together once a year. It has been very helpful. We have someone to talk to when our children have surgery who understand what we are going through. All of our stories are different but we all have somehing in common. We just got together with a family who will have a baby with exstrophy at the end of September.
Before my husband and I were married, I was told that I had Polycystic Ovarian Disease and would not be able to get pregnant unless I took fertility pills. I was given some pills that I took up until I found out I was pregnant. I do often believe that this was the cause of his Exstrophy.
Well, to our surprise, about 3 months after we were married, I found out I was pregnant, without taking fertility pills. In March, 1997, my son, Cullen (CJ) was born. We had tried to induce his delivery, but he didn’t want to come out into the world, so we ended up having a C-section. In the delivery, the anesthesiologist said it looked like he had a hernia. I remember thinking that everyone was being really quiet and something didn’t seem right. I finally said, “is everything alright?” They came over and started to explain that they needed to take him to another hospital and I had to choose where to take him. Being a first time mom, I had no idea. He ended up being sent by helicopter to Phoenix Children’s Hospital. I was so drugged out by the morphine they had given me, that I couldn’t explain to my mom (by phone because she was in Chicago), so I had my husband talk to her. When they had him all packed up, I remember one of the emergency guys telling me not to worry because “at least they could confirm that he was a boy!”
The next morning he was scheduled to have surgery to have his bladder put back in his belly. The nurse’s at my hospital were so nice. They offered to call someone they knew had a child with the same or similar condition. I agreed, and when I spoke with her she said that she was told when her daughter was born that she might not be able to walk, but now she does. I was beginning to feel a lot worse about things!
My husband went to PCH with his brother so that they could be there for my son’s surgery. I was supposed to be in the hospital for at least 48 hours, but they let me out less than 24 hours so that I could also go to PCH. Unfortunately, this was before cell phones became popular and I had no way to get ahold of my husband. Luckily, my husband called a couple of hours later and his brother came and got me!
PCH was a great experience. My son was released a couple of weeks later and has done really well. He grew up being very normal. He just had to wear pull ups a little longer than most kids!
I remember one time when he was about 3; he was taking a bath with his cousin, who is a year older. I remember Shane asking Cullen why his “pee pee” looked so different. I just cringed. I was in the bedroom attached to the bathroom and was contemplating going into the bathroom and “rescuing” him, but he just said “that’s because of my surgery.” Then Shane said “oh yeah, that’s right..what was that like?” I had tears in my eyes because I thought “I hope he will always be able to respond that way!”
When CJ was 5, I took him to Seattle to see Dr. Mitchell. I really like his doctor in Phoenix, but wanted to bring him to see someone who had seen a lot of patients with Bladder Exstrophy. I have to say that this was probably the greatest experience of my life. At first I thought our insurance would cover it, but about two weeks before, I found out they wouldn’t. I took him anyway, and they scheduled the last appointment of the day. When we went in, there were several doctors there with Dr. Mitchell. They asked CJ to go to the bathroom, which he did. They were so impressed that he could “pee on demand.” They were very positive and encouraging. Additionally, they said that his doctor had done a really good incision. When I left the appointment I felt so re-assured that he was on the right track. I had a smile across my face that literally hurt!
In first grade, he could hold his urine for a while, so we decided to try underwear. I bought him a watch that had an alarm that would go off every hour because he always “forgot to go.” We struggled a little bit with that, because he “wouldn’t hear it.” Or would forget to go. We were able to change the alarm to only go off when he turned it off. That worked a little bit, but looking back, I think it made it more difficult for him because all of the kids in his class would hear it and say “Cullen, you have to go to the bathroom.” When he stopped using the watch, I think he did better, although sometimes he would have an accident and not know it.
So, Cullen is now 10 years old and in 6th grade. He does really well in school (he skipped a grade) and has a lot of friends. Last year he was elected as his school treasurer. He is also involved in a lot of sports and is very involved in regular “boy” things!
He recently had to have a biopsy because of a cyst they found on his arm. Fortunately, it came back benign! I think his experience with Bladder Exstrophy has helped him to deal with these surgeries with courage. Last week, he had his second surgery to place a bone graft into the cyst. He wasn’t even concerned at all.
At this point in CJ’s life, Bladder Exstrophy does not play a big part. He is growing up as any other boy would. I do have concerns about adolescence, but we try to be very open with him and hope that he will come to us if he has problems. I know that sometimes it is difficult when he has to go to the bathroom more often than other kids, but other than that, most people would never know he was born with his bladder on the outside of his belly!
My husband and I were one of the lucky couples who fortunately found out half way through my pregnancy through ultrasound that our child had bladder exstrophy. Through several ultrasounds and several different doctors opinions, we were told that the sex was unknown, but our baby did have this rare birth defect. We were given very little information from the neonatologist. After a few days of feeling very very low, we began our quest. Thankfully with the use of the internet, we educated ourselves and then began looking for the best place for us and our family. We also had two little boys that had to fit into this picture. We talked to several different hospitals and then happily ended up at Johns Hopkins. We had several trips there before the birth of our baby. They were monitoring us closely because they thought that the baby also had bowel coming out. At the time, they were calling it bladder exstrophy with a "twist". Two weeks before my due date, we moved our family to Baltimore, as I didn't want to go into labor 3 hours away. The baby was born a day before my due date and suprisingly it was a girl. She was beautiful and three days later she had her initial closure. She did well, and about six weeks later we were sent home. As good as it felt to leave and move our family back home, it was also very scary. We came home, and a year and a half later, she continues to be doing wonderfully. She has been back for ultrasounds and a cystoscope. We are in the waiting game for her next procedure as her bladder continues to grow. She amazes us daily, and we too like most of you forget she has bladder exstrophy at times. She plays with her dolls and steals her brothers toys just like any other sibling. Again, like many of you have said after reading the different comments is that we hope she grows up well adjusted socially and emotionally. We do worry about her confidence. Any advice from the seasoned parents would be greatly appreciated.
Post a Comment