United Brachial Plexus Network, Inc.

Hi. On another post someone had mentioned other health problems bpi children have.
My son weighed 9# 13 1/2 oz. when he was born. He not only had obpi, he had an enlarged heart, about 1 day after he was born, he developed colitus. With every
diaper change he was bleeding. He was in neonatal for
meconium aspiration pneumonia. They did a few sigmoidoscopy's and they all showed ulcers form the stomach through the entire intestine. They would not let me breast feed, and instead fed him a predigested
formula. He couldn't even process soy milk. He also got very jaundice, and couldn't keep his food down. They told me if he needed a blood transfusion, they would just do it, with out letting us know first. (Thank God he didn't.) They sent him home because they didn't know what was causing this. To this day, they still won't admit, it was probably the meconium.
When we got him home, he was always in such pain. His phrenic nerve was damaged, and he would always choke on his food, and would stop breathing. He was on predigested formula for two years. It was a very hard time. I was also pregnant again with our 3rd baby. He would wake up nightly with foot, and leg cramps screaming bloody murder, (only on his obpi side.) He still has bloody stools, and upset stomachs once in a while. We keep childrens mylanta on hand. He had therapy 3x a week, and he was seeing a heart, lung, gastro, neurology specialist. He has since gotten better. (Thanks to God.) We call him our miracle baby, because the hospital sent him home to die. With preserverance (sp?), we have coped. Many people do not know what brachial plexus parents go through. We have so much to deal with on our plate.
It would be interesting to find out what else other children have had to cope with besides bpi.
I know I rattled on, but would like to hear from others about this.
Thanks,
Debbie

I call Ian my medically intresting child (although my four year old has had her fair share too!). Ian was born with Cateracts along with some other visual issues. At first we focused more on this rather than the BPI because congenital cateracts are often times linked with other serious dieases. At this point we do not know why he has them. We are going to try and have some genatic testing done when he is a bit older. If he does have something it is felt that it is a mild case but when he grows up he may never what to have kids since it could be passed down. My husband, Andrew and I need the info because it will help us decide if we should have more kids. About 5 days after birth we had to take Ian to the Emergency room because he would not wake up for more than a few seconds while we put cold clothes on him. After running a bunch of tests it was finally determined that he was just sleeping off his rough birth! Which is what we thought in the first place but the docs wanted to be sure. Then he had an abcess in his bottom. That was another trip to a specialist. In between that my daughter was tested for leukemia and does not have it but scared us to death! And she also had urinary tract issuses that we had to have specical testing for.
It was a very hard first fews months after Ian's birth.
I had been expecting a few weeks of recovery from labor and some great bonding with my son. Which did happend but we had tons of appointments and worries to wade through at the same time!
But we are Praising God because they are both pretty healthy! We have even been seeing some great progress with Ian's BPI!
Blessings,
Kristie

Hello,
Yes, my little girl had many other problems. We were in the NICU for 10 days after she was born. She had sepsis at birth, she had an episode of apnea, enlarged heart with a murmur, left hip dislocated, excessive fluid, and of course the BPI. They tested her for about everything. She had the CAT scan and that thankfully was ok. They attributed a lot of her problems like the enlarged heart and excess fluid to maternal diabetes that was not found even with testing.

My daughter is 7 and has Rt. obpi, Grade II Kidney Reflux, Esophageal Reflux, Arnold Kiarhi (brain) Malformation and tracking/processing visual reading problems. She has had her share of medical difficulties but she has a fighting personality. Nothing seems to get her down. She knows hospitals and painful tests yet still walks in to the doctors office with a smile on her face. She is getting another endoscopy next week since she has started with the vomiting/stomache aches again. It seems like worry is my middle name...

Thanks to all who posted here. It is nice to know that we are a group "family", all dealing with different things, and have a place to go to express ourselves. My best wishes for all the children here.
God Bless them. For they truely have courage.
Debbie