Brantley's story

Here is Brantley's story written by Tallan. 

June 29, 2011 started out just like any other day for a woman who was going in to have her first child. I was scared and nervous and had absolutely no idea what to expect. All I knew is that I couldn't wait to get my hands on him and hold him and do all of the other Motherly bonding things that you get to do when you have a child. What I didn't know was that our experience was going to be nothing like that.

 

I had my little miracle, Brantley, at 7:01pm that same day. As soon as he was born I knew something was wrong. The doctor checked his palate to see that it was intact and nothing was wrong with it. (We had found out months earlier that Brantley would be born with a cleft lip, we thought that would be all he would have to go through.) After that, nurses and doctors started rushing in before I could even ask what was wrong. They took him to the side and began doing things to try to help him breathe.

 

One of the nurses came to me and told me that our son wasn't breathing very good and they were going to take him to the Nicu. She let me hold him but only for just a minute. I couldn't understand that something that small and innocent already was having problems and he wasn't even an hour old. When the nurse took him from my arms, I felt my heart drop and sink deep down into my stomach. I just knew this couldn't be good.

 

They took him away after that and I was moved to my regular room. We sat and waited till early in the morning for news, that wasn't anything what we wanted to hear. The doctor told us that he was born with pneumothorax or a collapsed lung, and that he also had pulmonary hypertension which was abnormally high blood pressure in the lungs. They had put a call in to Lebonheur to see if they would accept an emergency helicopter transport.

While we waited on that, the doctors let us see him in the Nicu. I was not at all prepared for what I saw.

 

When my husband, Jacob and I walked in the room, our precious little boy was laying there arms out, hooked up to what seemed like hundreds of different things. I was very overwhelmed. I was not expecting that at all. It still hadn't sunk in just how sick our little boy was. He was on a ventilator to help him breathe, under a vent, under lights, cords going this way and that way. It was too much, "Why my son?" that's all I could think.

 

He was flown to Lebonheur the day after he was born. Once there, the doctors went right to work in the Picu. We had doctors in and out of the waiting room talking to us, telling us what they were going to do next and as soon as they had some results they would let us know. We were hopeful each time the doctors came out, hoping for just the slightest bit of good news. Things just kept getting worse.

In the early morning hours of Brantley's first night at Lebonheur we were told what no parent ever wants to hear. The doctors came in this time and told us to get the family together because they were going to put him on ECMO, a machine that oxygenates your blood through tubing in the machine and then back into your body in other words,life support. They told us that ECMO was a very serious thing I remember the doctor telling us "Your baby is as sick as a person can possibly be." I thought those words were piercing, the doctor only went on to tell us that they couldn't say if our baby would live or die. That is when it really hit me that my son, my precious little baby, was in fact very very sick.

 

He was on Ecmo for 6 days. While on Ecmo, they also put chest tubes in on both sides to help him breathe more comfortably and to suction out the fluid and air that had formed around his heart and lungs. He even hemorrhaged some while on Ecmo and one of the doctors said "It was like walking a tight rope"..."we cant say what will happen next" Hundreds of test were ran to see what all was going on with our precious baby. We even had to give blood to for genetics purposes. It was absolutely one of the worst things a parent could ever go through and still not knowing if your baby will live.

 

Once he came off Ecmo, we may not have noticed then, but looking back that's when things started to SLOWLY progress. He started coming off the sedation medicines they had him on and we saw movement and his eyes started opening more. After a few days we heard him cry for the first time. I felt a bit of relief hearing that precious sound come out of him. I finally got to hold him again and Jacob got to hold him for the first time. We made the best of it even though our hearts were hurting to just have our baby home and healthy.

 

We were still terrified with not having any idea what was going on. The doctors told us all they knew and were so helpful with information if we didn't know what something meant. But going through something so traumatic it was like a train was going by when they were talking or when we read something it was like it was in another language. We just couldn't comprehend why this was happening to our son.

 

Brantley started seeing a number of different doctors at the hospital. Neurology came and after many different test we found out that he had polymicrogyria which was a developmental malformation of the brain. This can cause many different things such as seizures, developmental delays, speech and swallowing problems and even paralysis all depending on the severity.

 

He also seen genetics. Even more test were ran here. After about a month we found out that Brantley has a partial 4q chromosome deletion. These symptoms included growth deficiency,varying degrees of mental retardation,malformation of the skull,face,hands, and feet, heart defects and many more things again depending on the severity.

 

Brantley seen many more doctors who told us more information about his conditions. It seemed like it was never going to end. "I didn't even realize there was a doctor for that?" Is one thing i remember saying just about each time we seen someone new.

 

A little over a month had passed and Brantley got to move to the Nicu at Lebonheur which we were told was better than where we were but still serious. Once there we started trying to feed him. He took to a paci very well at first and I was so excited. Then with the bottle he done okay at first then would start to choke. So it was decided until further notice he would be strictly Ng tube fed. After many test it was discovered that he had poor swallowing muscles from having the polymicrogyria and he was choking on the milk causing him to aspirate a little bit into his lungs. Doctors told us to be prepared that he may need a g-tube.

 

Time passed...slowly. But while it did we found out all the information we could about our little miracle. Brantley's case was so unique that there are only 3 other cases in the world that can be compared to his. And none of them are exactly the same. We knew he was special but didn't realize just how special of a little boy God had sent us.

 

September came and was probably the best month we had since being there. On September 1, after much consideration the doctors decided it would be best to insert a gtube in Brantley's tummy so he would be sure to get the right amount of nutrition. This was his first surgery. He done great and recovered amazingly. Finally, after a nearly 3 month stay we got to come home on September 12, 2011.

 

We were home 2 days and then taking back to LeBonheur by ambulance. Brantley started having seizures. We spent 2 more nights in the hospital. Brantley was put on medicine to control his seizures and we were sent home again. Once home we got on the best routine we could and just went with it.

He was in and out of the hospital with sickness or with us just being paranoid, most of the time we were right and he was sick. His immune system was just so weak and young. Plus he was on oxygen also and that dried his nose out and made him sound a hundred times worse.

 

After a few months home he was diagnosed with hydrocephalus, fluid that builds up inside the skull causing the brain to swell and making the head abnormally large. We were told he would need a shunt placed to help drain the fluids and stop the brain from swelling. In April 2012 he had his second surgery for the shunt placement.

 

He also seen an eye specialist that told us he is going to have to undergo eye surgery before or around the age of 2. He needs eye muscle surgery to help strengthen them and make them straight. He is 19mo old now and we have not had the surgery yet. His left eye is not strong enough for the surgery yet so he has to wear a patch over his eye for 1 to 2 hours a day. Hopefully soon we can get this surgery out of the way.

 

He also had his cleft lip repair in October of 2012. Making a total of 3 surgerys so far. The surgery went great and his lip looks amazing! It only took one surgery because his was not bad at all. I have to admit I do miss his little spit bubbles going up into the side of his cleft it was too cute, but he looks like such a big boy now.

 

Today, Brantley is a happy 19 month old little boy. He doesn't sit up on his own,walk or talk yet but we are slowly working on all of that. He sees speech and physical therapy every other week. We do home exercises with him and see him progressing at his own pace. He will roll from side to side and laugh and coo some. He moves his arms and legs very good. Eats very little by mouth, maybe 5 or 6 spoonfuls of baby food. He hasn't aspirated since being in the hospital. He still chokes quite a bit but we know his limits and never push him past them considering how sensitive he is to oral activities anyway.

 

Its nothing for him to see 2 to 3 different doctors a week. He sees pulmonology, cardiology, pediatrician, neurology, g-tube clinic, plastic surgeon, neurosurgeon, endocrinology, ENT, Opthamology and a few more I'm sure but these are the main ones. Hospitals and Doctors offices have became a normal routine for Brantley.

 

So far, Brantley has been diagnosed with the following problems, Pnemothorax, pulmonary hypertension, polymicrogyria and hydrocephalus. Also he has the partial 4q chromosome deletion. He has chronic lung disease of newborn and also asthma. He has asd (heart condition) which we are hoping that the hole will close up on its own, if not he will have to have surgery to close the hole. He is fed by gtube. He has developmental delays, acid reflux and we recently found out he has a growth hormone deficiency.

 

We are currently going through the growth hormone tests. He has already had 2 test and we have 1 more to go through. After that, I will be giving him a nightly shot that will allow him to make the right amount of hormones in his body to gain the proper amount of weight and height. Right now, he only weighs 20 lbs and 11oz and he is 27 inches tall.

 

I stay at home with him everyday and work with him as much as possible. We still to this day do not know what the future holds. But we are hopeful that he will one day walk and talk and do most of the things that a typical child can do. We just take it one day at a time and work with him on as much as we can. He is a blessing and I am more than proud of him for all he has had to go through. I never knew that a baby could be that strong.

 

Each day with him is cherished. Raising a child with special needs is very hard. But no matter how stressed or exhausted I get, looking into Brantley's eyes and seeing life and a happy little boy makes everything worth it. I can never thank Lebonheur and the workings of God enough. I am grateful that God put him in the hands of some of the most amazing doctors I think I have ever met.

 

Brantley is such an amazing little boy and I am looking forward to sharing his story with the world. He is my "little miracle that could" because just like the book "the little engine that could" Brantley was given hard task to overcome. And once he gets older I will teach him the meaning of the book which is to be optimistic and never give up on anything no matter what you are faced with. Brantley once was faced with near death and he never gave up and he kept fighting no matter how much pain he was in. He is my world, he is my rock and I too because of him have learned to be optimistic. And I will never ever give up on him!

 

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