The Bailee Ada Foundation

Bailee Ada Choate

Bailee was born on the 24th February 2006. She weighed 3360grams and when we were discharged from the hospital, we were of the assumption that she was a healthy little girl.

It wasn't until a few weeks went by that her health nurse was a bit concerned as she wasn't putting on a great deal of weight and throwing up after her feeds. I contacted her pediatrician and after two more months of various testing and having no real answer we were admitted into the Royal Children's Hospital in Melbourne for investigation for failure to thrive and further testing. This was on the 31st May 2006.

We were in the hospital for a week and she underwent numerous tests which also included genetic testing. Two weeks after coming out of hospital with the only answer being her thyroid, we had a follow up appointment with the genetics department.

By the end of June 2006, it was confirmed that Bailee suffered from a rare genetic disorder called CDG and she had type 1A. As you could imagine, Kevin & I were very shocked as there was not a great deal of information about this condition and we were told that she was the 600th case in the world.

From there on in it was constant visits to numerous specialists and hospital stays. She suffered from developmental delay, eye, ear, heart, liver, kidney and thyroid problems. She also saw a dietician as her formula had to be altered so as to try and get some weight on.

We constantly weighed Bailee, and on the 24th July 2006 her weight was just over 4.6kilos. She had put on just over 1.3kilos in 5 months. As a result she had her nasal gastic (NG) tube inserted on the 25th July 2006. In the middle of August, she was fitted with a cochlear hearing aid as she had severe hearing loss for high frequencies in the right ear and mild hearing loss for high frequencies in the left ear.

We wanted Bailee to have as much of a normal life as possible, so we put her into creche. As the staff were not trained in ng feeding, we had to organise training by the HACC team at the Children's Hospital and also find money to pay for this. It was a nightmare. Many phone calls were made and finally after making an application to fund the training to Baptcare it was granted. Bailee went into creche at the end of August 2006 and the staff were capable to feed her by December. During this time, one of my lovely friends would go to the centre twice a day and feed her.

In September 2006, Bailee was admitted to hospital, she had viral pneumonia. After a week in hospital, we were discharged. During this stay, we were included in the accelerated care through emergency (ACE) program. From when Bailee was diagnosed, we were constantly in the hospital, either having specialist appointments, physio, meeting with the dietician or an ed visit. Through this program, if i ever had any questions about Bailee's health or we had to visit the ed we called them first and they organised everything.

Also in September, we had a visit with her gastroenterologist and it was decided that she will need a fundoplication to stop the constant vomiting.

As you can imagine, having a ng tube was very annoying for Bailee and whenever the chance arose, she would pull it out (which meant more visits into the ed for reinsertion). By October, i was sick of it, so i organised to be trained myself to reinsert the tube.

On the 21st December 2006, Bailee had grommits inserted and after that we couldn't keep her quiet. While all of this was going on, we still had regular appointments with her peaditrician, gastroenterologist, nephrologist, geneticist, dietician, ent, australian hearing, cardiologist and endocrinologist.

In January of 2007, Bailee contracted gastro. Not a big deal we thought. We were admitted into hospital on Sunday 28th January as she was dehydrated and had lost 500g in the last 5 days. Also her blood sugar was low. We were discharged on the 30th January with her weight back to 6kilos and her being back to her bubbly self. When we got her home she slept all day on the Wednesday and she was getting a bit grumpy on the days after that. Her stomach seemed to get bigger and in my medical terminology i thought she either needed to do a big 'poo' or vomit. As she didn't seem to settle by the saturday, off to the emergency dept. we went.

We were admitted on the 03rd February 2007 as Bailee had liver failure due to her dramatic weight loss and this in turm affected her liver. The next 24-48hrs we were informed were the most important. After those days had passed, Bailee was getting more alert and her stomach was not getting any bigger. We were told that this visit was not going to be a short one. With this in mind, i returned home on Sunday the 11th Februay and packed my bag for a long stay, so Kevin could go home and return to work and care for our other daughter. Bailee had other ideas. At about 9pm that night, she was taken down to ICU as she had contracted an infection in the blood and after a transfusion, she still wasn't any better. We were told that there was nothing else that could be done and that we had to make a decision. Bailee made this decision for us. On the 12th February 2007 @ 6am our baby girl passed away with all the people that loved her around her.

Her life may of only been short, but through it all, she was always smiling and happy. She was put on this earth for a reason. The main one was for us to have her part of our family and to love her unconditionally and the other was to start up this foundation and keep her smile alive.