Joey's Story

The Gayne Family
Joseph Gayne’s Journey with Hirschsprungs disease:

Joey was born at 38 weeks gestation at Blanchfield Army Community Hospital in Ft Campbell KY. Shortly after he was born, I tried to feed him and he would eat and then throw up everything he ate and he would throw up green and yellow bile.

We alerted the nurses and then the pediatrician came into talk to us. He said they were concerned because Joey was throwing up bile and he hadn’t stooled yet, so they took him to the special care nursery at the hospital. They also did an x-ray of his belly and found that he had a lot of stool and they said they think he has a blockage so they told me and my husband that they wanted to transport him to Vanderbilt Children’s Hospital. The neonatal transport team came and took Joey to Vanderbilt early the next morning. The hospital discharged me as well so I could be at Vanderbilt shortly after he arrived there.

When we got to the Vanderbilt Hospital, we met with a surgeon that did a few tests and wanted to do a biopsy.

So at 3 days old they did a biopsy and it was confirmed he had Hirschsprung's Disease so they were going to do a surgery to fix it. When Joey was 5 days old he had a rectal pull-through done and then we stayed in the NICU for a little while, and while in the NICU Joey also had another surgery for his posterior urethral valve, and then shortly after we were released to go home. My husband was in the army and he was set to deploy shortly so we soon said goodbye to daddy for a while but we knew he would be back soon. Joey and I went to Las Vegas to see my husband’s family for a while, and while we were there Joey got very sick at about 5 weeks old. He was very lethargic and had blood in his stool so they confirmed that he had entercolotis and kept him in the hospital for a few days and then he was released and shortly after we went to stay with my parents in Missouri.

When we got to Missouri Joey did well for a little while, then he became sick again and I took him to our local ER at the military base and they sent him to St Louis Children’s Hospital and shortly after we arrived they confirmed Joey had entercolotis, so he was put on flagyl via iv and was in the hospital again for a few days.

During one of his hospital stays at St Louis Children’s when he was about 8 months old we found out he also had seizures so that was added to the mix and we had a long work up for that as they thought he had meningitis but it wasn’t. He was then started on anti seizure meds. He was then released and told to come back for a check up in a few weeks so we did and he was doing well. He got entercolitis a few more times and same thing—he was admitted again on flagyl and then we moved to a different hospital in Columbia Missouri and same thing happened again he was admitted a few time with entercolotis.

Then Joey started having problems with constipation and diarrhea and the drs at Columbia women and children’s hospital recommended Joey have Botox injections to help with constipation so we did and that seemed to help for a while.

Then soon we were welcoming daddy home so we moved back to Tennessee for a short time and saw our drs there and they said Joey was doing well. Shortly after the appointment we had a colonoscopy and the dr also recommended we have a endoscopy so we did and I am glad we did. They found out Joey had EOE also so he basically had allergy cells in his esophagus. So that was why he wasn’t growing like he should of been. So we took different foods out of his diet and were told to come back and see them in a few months but then daddy got orders to Ft Rucker AL to train to be a helicopter pilot so we moved again.

We moved to Alabama, which we loved and when we arrived there we were told the closest children’s hospital was 2 1/2 hours away, so we made the long drive to Pensacola FL every few months to see our drs.

When we were in Pensacola seeing our GI dr, Joey ended up getting admitted because he had a test done and had a seizure right before it so they admitted him while we were there they also found out he had entercolotis again so he was put back on flagyl antibiotic via iv. We also saw drs for his EOE but we still were not getting anywhere with his weight gain he was still very small. So we saw ours drs at Pensacola every few months and Hirschsprung's wise, he was doing well. Then mommy did some research for a hospital that specialized in the Hirschsprung's Disease and EOE and our dr in Pensacola helped us out and we found drs in Birmingham AL, so we went there and saw a few specialists and Joey started doing well we thought and he ended up having Botox into his sphincter again and a few more scopes then shortly after our time in Alabama was up it was in fact time to move again. So daddy said we would be moving to Alaska but we soon found out we couldn’t go there with Joey so we did some more research to see where we could go and they said we could go to Ft Drum NY so daddy’s orders got changed to Ft Drum NY.

We moved to NY and we saw specialists in Syracuse NY and we tried different approaches with Joey to help with his EOE and Hirschsprung's Disease.

We didn’t really get anywhere so mommy go on the internet and started researching places near by that specialized in Hirschsprung's Disease and we found a place called Mass General Hospital for Children so mommy went to the pediatrician and got referrals to go see them. We had our first appointments with Dr Goldstein and Dr Belkind-Gerson in March 2013 and explained all Joey's issues and they were wonderful. Shortly after, Joey was on the right track. He was seeing all the specialists he needed, and we even got the EOE figured out somewhat. Joey got a G tube in September 2013. Dr Goldstein placed it and he has been growing and doing well ever since. He has gained 4-5 pounds and 1 1/2-2 inches and we also notice he doesn’t get sick as often. I remember before Joey had his G tube people would ask me if my 2 year old and 5 year old were twins and I would say no, thinking man did they look that much alike height wise and weight wise, and now I realize they did look like twins.

We don’t get asked that anymore. Now people ask me how old are they. Its wonderful having such an amazing team that has helped us get this far they are great! Joey has been through a lot but he sure is a strong energetic little 5 year old boy!

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