Hall, Brandon

[left:acc53e9270]http://www.cherubs-cdh.org/Album/new/hall-brandon7.jpg[/left:acc53e9270]I had a pretty uneventful pregnancy. My first ultrasound was done at about seven weeks to determine if it was in my tubes. Everything was fine. Things went well until my 36th week. This was to be my first internal exam and my doctor could not feel the baby’s head but I had dilated to one and he said I was paper-thin. He then did an ultrasound, which confirmed the baby was breech so we discussed our options. I agreed on a c-section if the baby didn’t turn. He said everything else looked great. Six days later we thought my water was leaking so off to the hospital we went. They did an ultrasound and asked when my last one was. I told him six days ago and he said "Was everything OK?" I told him yes. Well they said my water wasn’t leaking and sent us home at 3 a.m. The next day July 17,1996 we went out to dinner and then walked to a friend’s house. While at our friends I was holding her eight-month-old son and placed him on the floor and my water broke! Talk about a mess. We called the Dr. and it took him 45 min. to return my call. He sent us to the hospital. By the way my Dr. wasn’t on call so I was dealing with a stranger. We got to the hospital and they prepped me for the c-section. Things were going smoothly and my husband actually asked if I could feel them cutting me! Well they pulled out our son and cut the cord and that is when our nightmare began. His "cry" sounded like a sick mew and then nothing but silence. No one was saying anything and all we could see of our little boy was them performing CPR. It seemed like an eternity until someone said anything to us. They told us we had a very sick little boy and were taking him to x-ray. The first look at my son he was already intubated. They came back and showed us his xray and told us he had Congenital Diaphragmatic Hernia. What?? I had never heard of this. They were waiting for the transport team to take him to Children’s which thankfully was just around the corner. My husband didn’t know what to do. He was torn between being with me and going with our son. I sent him with Brandon. I would survive but would he? They brought him in for us to see before they took him and he was the most beautiful child despite all the wires. They took pictures for me to have and I clung to these ferociously throughout the long, sleepless night. They gave me something but it didn’t work. At five a.m. the phone in my room rang and it was the hospital. They said they needed to put Brandon on ECMO. They had tried nitrous oxide and it wasn’t working. He explained what ECMO was but it didn’t matter. He also said insurance may not pay for it and I told him I didn’t care he was to have whatever chance they could offer. My husband went back to the hospital after about four hours of restless sleep. He came and brought some pictures of Brandon on ECMO so I would know what to expect. Do to the c-section I had to stay in the hospital. I had lots of family and friends visit but it didn’t take the loss of not having my son with me. The next day (July 19,1996) my Dr. came in and I sat up in bed. He said if I could sit up I could go home! They removed my staples and my husband came to take me to our son. I had never seen anything like a NICU before and was shocked at all the babies. Brandon was in the very back. I was finally with my son. They explained everything and I just nodded. He was stable. When he was one week old they decided to do the repair while on ECMO. They had to close down the back portion of the NICU. I felt bad that the other parents couldn’t see there children but it had to be done. It didn’t seem to take long only a few hours. The Dr. came out and said that Brandon’s defect was one of the largest he has ever seen. He said that his stomach, intestine, and part of the liver were in his left lung cavity. He said he might never have a top bud of his left lung. The next day Brandon successfully came off ECMO. He was on for seven days. When Brandon was twelve days old I finally got to hold him. He was still on the vent but the nurse new we needed each other. He came off the vent when he was three weeks and one day old. He still needed O2 though. On Aug.1 when we came to visit Dr.’s and nurses surrounded Brandon’s bed. Brandon’s heart rate was 340 beats/min-normal was in the 170’s. They called this SVT. This was very scary but it was corrected with medicine (digioxin). At about this time a routine chest x-ray showed that his Gore-Tex patch had come loose. He had reherniated. This they called a paraesophageal hernia. They also discovered severe reflux. On Aug. 12 when he was 26 days old he had his second repair. They also did a nissen and put in a g-tube for feeds. I was devastated as I had planned to nurse but I was pumping my milk for him so that was something. Brandon was tired of the vent and six days later he self-extubated. He improved rapidly and we brought him home when he was six weeks old with O2 for oral feeds and an apnea monitor due to his SVT. Three and a half weeks later we had him in the ER in respiratory distress. He had reherniated again. Our Dr. had never heard of this happening so many times to the same child. He had his third CDH repair two months and one week old. He did very well and came home after five days. We battled severe gagging/retching until Dec. 96 when they decided to dilate his nissen. This was to be an outpatient surgery but Brandon decided he liked his 02 so we stayed for two days. He came home on continuous 02 for three weeks when he was finally weaned from it .He was doing great except for some developmental delays. He was always happy so when he became continuously irritable we knew something was wrong. Another chest x-ray confirmed our fears. He had once again reherniated. This time the bowel was in a loop and was at risk of becoming constricted. On April 7,1997 he had his fourth CDH repair. He came home four days later! The Dr. also discovered a reherniation on the right side but did not want to risk opening him up in another area so we needed to watch him. Brandon continued to do great except in the feeding issues and the gross motor dept. In October he started to cough and gag continuously. It was time for surgery. His paraesophageal hernia was pressing on his esophagus. His fifth CDH repair was performed on my 30th birthday, Nov.4, 1997. It was to only take 3-4 hours but instead took seven. Brandon had a tear in his colon and his patch was infected. They removed the patch and were able to use muscle. They also removed his appendix as it was out of place. He spent four days on the vent and two weeks in the hospital. When he came home he was as happy as ever and would occasionally eat a few bites. In Jan. 29,1998 an x-ray to rule out pneumonia reveled another paraesophageal hernia. Once again we were told to watch and wait. The Dr. said it could be months or even years. The Beginning of this month (March) Brandon began gagging/retching again. He had an UGI that showed his bowel has moved higher. He then had a CT Scan that shows his heart is displaced slightly and it is taking up lung cavity. It also goes around the esophagus. As I sit and write this we are waiting for March 31, so he can have this repaired. The Dr. has honestly told me he doesn’t know what he is going to do. He is contacting others for advice. I know everyone is thinking get a new Dr. but it is not the Dr. for some reason Brandon’s body is doing this and we hope to find answers soon. I don’t write this to scare others as Brandon’s case is unheard of but I had to write our story I guess for me.

Brandon came through his surgery just fine. They used Gore-Tex patch called Duomesh. They also place a patch on his abdominal wall to strengthen it due to it being weak from the use of his muscle in his fifth repair. He was in the hospital for one week. We came home on April 6,1998. On April 17 he was admitted with Rotavirus and then readmitted on May 1st with an infected incision. They will need to operate and remove the patch on his abdominal wall as it is now exposed. Other than that Brandon is fantastic! He is coming along in his gross motor skills and is eating Cheerios and crackers. We still have a long way to go but he is a trooper. In June Brandon had the patch removed and came home two days later. He is doing a lot of new things now like pulling to stand. He amazes us everyday!


Update: 2006

A lot has happened since I wrote our son Brandon's story back in 1997. He is now 10 yrs old, in the fourth grade and doing amazingly well. On his fifth birthday his g-tube for feeding was removed. I can't tell you what a celebration that was! We had to take him from Ohio to Virginia to the Kluge Encouragement Feeding Program where we spent two weeks getting him from almost total g-tube feeds to 100% oral feeds but it was well worth it. Brandon had global developmental delays until he was around six when he finally caught up in the gross motor area. To this day he still has fine motor delays and receives OT at school. We also discovered scoliosis several years ago but this has thankfully remained unchanged and very slight. We started seeing a pulmonologist a couple of years ago to try to find out why Brandon was still slow to gain weight despite adequate caloric intake. Basically Brandon's breathing burns more calories than normal so we just try to get him to eat as much high calorie food as we can.

Recently Brandon has been complaining about being different and having scars. This saddens me and I talked to him and explained that he should be joyous of those scars and that every time he looks at them they should remind him how special he is and that God has a purpose for him in this world. I hope he understood. To him they are ugly, to us, his parents, they are the marks of many prayers answered and I never want him to take that for granted.

Brandon is a typical boy these days. He is in karate and is getting ready to test for his red belt (five more for a black belt or 2.5 more years!). He is small for his age and isn't all that athletic but that suits me just fine! He tries hard and that is what matters most.



Written by Brandon's parents, Jeff and Tara Hall (Ohio)
1998, Updated 2006