Make A Child Smile

Branen's Story
written by mom Erin

Branen Jacob was born on August 13th, 1998. My pregnancy with him was a hard one. Branen was a scheduled c-section (I had already had one with Bray, our other son), but he still decided to come a day early. And it was a good thing, that morning he was born, the doctors found out that he was a breech birth. Needless to say they hurried us into surgery and he was born at 8:22 am. Everything was normal after that. He had no problems in the hospital and none after we returned home. He was at good weight, 7lbs. 2-2/3 oz., nothing to be concerned about at all.

When Branen was about 2½ weeks old, we received a phone call from our family physician. He explained to me that Branen's newborn screen came back abnormal for Cystic Fibrosis. He then gave me a number to call to set up a sweat test to confirm or not confirm the results of the newborn screen. After I got off the phone with him, I bursted into tears. My husband was just getting ready to leave for work and I begged him not to go. Here is this beautiful baby boy, perfect in every way, now sick. I made the phone call to the lab and set up an appointment for the sweat test. Unfortunately, we had to wait until Branen was a month old for the sweat test to be accurate. That was the longest 2 weeks of my life.

When the day came we made the long 2½ hour drive to the lab. The test itself was going to take anywhere from ½ hour to 45 minutes and then 1 hour to get the results. The day was excruciating. When the doctor walked into the exam room, my heart dropped into my stomach. He looked at us and blurted out, "Well, it looks like CF. What are we going to do about it?" I didn't know if I wanted to cry or punch him in the face. How rude I thought. Couldn't he be a little more sensitive to our feelings?

We then got the run down on CF. Cystic Fibrosis (CF) is an inherited disease that affects the lungs and the digestive system. The CF genes cause the body to produce an abnormally thick, sticky mucus that obstructs the airways of the lungs and clogs the digestive track in the stomach and mainly the pancreas. These obstructions can lead to life threatening diseases and many hospitalizations. Currently there is no cure for CF, but there are many drugs, gene therapy's and vitamins that are used to help keep a child or young adult healthy. There are 30,000 children and young adults affected with CF and numbers are rising making it the most common fatal genetic disease today. So a cure is important.

At a month old, Branen had to start eating apple sauce because he had to take enzymes to help his digestion. He also had to start taking Adeks vitamins, just a supplement to make up for the vitamins he wasn't getting. And as a baby he had to drink a special kind of formula that was easier on his digestive track. From birth until 11 months old was real good. He had the normal colds and virus' that kids get, ear infections, etc. But in July of 1999, he was real sick. He couldn't keep anything down, in his stomach or bowls. We called the doctor after almost a week of this, he admitted him right away. He was hospitalized with a gastrointestinal virus, very normal for a child with CF. But a new experience for us and a very stressful experience. He spent 4 days total at Marshfield Children's Hospital, lost a little weight, but returned home in good health.

We had three other hospitalizations after that... Bronchitis, Rotavirus and Pneumonia. The pneumonia was the one that scared us the most. It was a normal summer day and we had both our boys at the park. All of a sudden I could see that Branen was struggling to breath. I ran over and saw that he was spitting up blood. We immediately took him to the emergency room. We spent five hours there and they couldn't find anything wrong with him (this wasn't our CF hospital). We returned home, he ate and drank normal and I put him to bed. After I laid him down he was coughing pretty extensively and then started coughing vigorously then throwing up blood.

I immediately called 911 and we went back to the hospital that sent us home earlier. They admitted him for observation and the next morning we were transferred to Marshfield Children's. He was admitted there with pneumonia and they ran many tests. He underwent nuclear testing and had an endoscopy to try to figure out where he was losing blood from. No one could give us an answer to why or guarantee us that it wouldn't happen again. We hope that we will never have to go through that again.

The problem that continues with him is his eating disorder. I never thought in my wildest dreams that a little kid could have an eating disorder, but it happens. From the time we took him off of baby food at 1½, he has had a problem with eating “real food”. He has all the doctors, nutritionists, psychologists, basically everyone in the medical field baffled. He will not look at, try or even touch food. It has been a challenge with him, but he has grown to FINALLY like certain foods. We switch back and forth between Macaroni and Cheese and chicken nuggets every night, and he brings cold lunch to school with a peanut butter sandwich and fruit snacks. I look at him everyday and wonder when he will be able to eat dinner with us and enjoy it. We try everyday to get him to eat, it’s a battle, one that we will keep fighting.

He shows to us everyday that even though he is "sick", it's not going to slow him down. His treatment is now a little more aggressive. He does his chest percussion therapy with the ABI Vest 2 times a day, for 30 minutes. He also has to do an albuterol nebulizer 2 times a day, this lasts about 15 minutes each time. Along with his albuterol, he has two other neb treatments that he does daily. That's two hours out of his day that he has to sit still, and believe me, sometimes that's a chore in itself.

Branen is finally at an age that he understands that he is “different” from his friends. We’ve had to fight with him at times to take his medicine and do his therapy. But usually, between the tears, he understands that if doesn’t do it, he will get sick and have to go to the hospital. The hospital stays have been fewer in that last few years, but the length of time at the hospital has been longer. Branens average stay is about 3 weeks. And sometimes that 3 weeks feels like an eternity.

In October of 2005, Branen had something very exciting happen to him. He was chosen by the Catch-A-Dream Foundation to go on an all inclusive trophy whitetail deer hunt. Hunting is his passion (so is dad’s!). The foundation flew us to Springfield, Missouri and we spent 3 glorious days at the Little Flat Creek Ranch were Branen was able to harvest a monstrous 255 lb., 11 point buck! It was a wonderful experience for him and our whole family.

He is growing, FINALLY!! We hope to see him catch up to all of his friends soon. He has been busy playing T-ball and jumping on the trampoline. It’s hard to get him in the house at night. He loves it outside. Cystic Fibrosis for Branen is just a word that he hears. He doesn’t let it slow him down at all. When you ask him what is wrong, he’ll just tell you that God made him special. Indeed he did!