Form of EB: Junctional EB with Pyloric Atresia
Born: March 28, 2000
A tribute to Brogan from her aunt Rachelle:
Brogan was born on Tuesday March 28th 2000 to Diane and Paul, she was 7 weeks early and weighed 4lb 3oz. Immediately she was taken to special care. 4 hours after her birth it was discovered that the nurses couldn't put her feeding tube to her stomach as there was a blockage and she would have to go to a nearby Hospital for a minor operation to remove the blockage. It was also around this time it was noticed that a part of Brogans ankle had no skin on it. We were told all of this would be sorted out at the same Hospital.
The next day Brogan had her operation
and everything went well, although more and more skin was coming off her
legs. The Doctors at the R.V.I. Hospital where Brogan was staying, telephoned
a specialist at the children's Hospital in London and they where given
instructions on how to deal with Brogan's skin. We were then told that
a specialist from Great Ormonde street Hospital in London was coming to
see us on the following Monday, which would be 6 days after Brogan's birth.
A sign had went up above Brogan's bed with a warning telling the nurses
about her skin. It was then I saw the dreaded name Epidermolysis Bullosa.
Being the nosey aunt I was I wrote it down.
On Monday 3rd April we had our visit from the EB specialist from great Ormonde street. By the time she left us to fly home we were devastated, and so our fight with EB began. Six weeks after her birth her biopsy was ready and we were told she had Junctional with pyloric atresia. The test had showed there was very little protein missing from her skin. This was good news as far as we were concerned. At least she didn't have Herlitz.
At 6 weeks old Brogan was allowed
home. We had a lovely homecoming party, we decorated the outside of the
house with balloons and banners and we even put an announcement in our
After she had been home around 7 weeks then her problems really started. She started to suffer from a prolapsed rectum at the age of thirteen weeks and was admitted to the Hospital. Brogan was there for a while. Her skin started to gradually get worse. It was around this time that she was taken to a larger Hospital as she was suffering from an infection and had to be ventilated. This caused her lung to collapse and she was did very, very poorly for a while. She picked herself up yet again and returned home, but not for long. She was in and out of Hospital constantly with infections and breathing trouble, being home for just a few weeks at a time. When she was around 6 months old she suffered from septicemia which caused her to have kidney failure. It was the opinion of the nurses and Brogan's family that she came as near to death at this time as anyone could ever get. Her organs had started to shutdown and the doctors thought they had lost her. They even canceled a crash team they had called for from a nearby Hospital that she was to be transferred to but it was thought it would be too late by the time they got there. But thankfully they came anyway and Brogan lived to fight another day (yet again).
Nine month after her birth after suffering constantly from bad reflux and very poor weight gain, Brogan had problems keeping any food down at all. And when she could keep it down she would have really bad diarrhea. It was at this time we where told there was nothing more that could be done for her. At this time Amy, Brogan's cousin, wrote a poem for her.
For the next few days all we could do was just stand by and watch her suffer. One of Brogan's dedicated doctors had been doing some research and it was decided that they would try this one last thing to help her. She was transferred yet again to a bigger Hospital, and she had a central line placed in her chest that would feed her straight to her heart. This was a very tricky procedure and the line had to be kept sterile at all times to prevent an infection going straight to her heart. It was thought this would be the answers to all her problems. So the week before Brogan's first Christmas she had her line inserted and she came through the operation really well. At the beginning it didn't seem to make a difference to Brogan and the doctors thought all they had to do was find the correct recipe with her drugs.
At 9 month old she still only weighed
10lb. So Brogan spent her first Christmas in the Hospital and sadly did
very poorly that day. She did pick up a little bit after this, and 4 weeks
after she had her line in she came home for a few hours and it was a really
great day. Then the next week we where told that the line hadn't worked
and it wasn't doing Brogan any good at all. The more they tried to help
her the worse she got. Her skin was getting worse by the hour. In the
end all the line was doing was filling her with fluid which was gathering
under skin causing it to stretch, which caused it to blister. She was
also showing signs of internal damage. On Monday the 29th of January it
was decided that it would be best for Brogan to be christened as she was
deteriorating quickly. Over the next few days Brogan's medication stopped
and her line was removed. All we could do was sit by and watch her die
over the next week. Brogan fell asleep on February 4th, six days after
her christening and after one hell of a fight. She died as she lived,
fighting. She had came through so much we thought she would live forever.
Brogan made such an impact on everyone's life whom had the pleasure to
know her. And those that actually got to meet her fell in love with her
big blue eyes and her lovely long lashes...
It is our intention to stay in touch
with the nurses. Most of the nurses who weren't on duty the day of Brogan's
funeral attended the service. Diane has been back to see them to give
them their poem and photo, but it brought back too many memories and so
she's going to leave it a while before going back. Diane has decided to
try for a career in nursing once she has the qualifications she needs.
Brogan couldn't have had more devoted parents if they had been hand picked.
They absolutely adored their little miracle and wouldn't have missed a
minute of her special life. Never once did they say why us.
Here are a few more poems Amy has wrote.
This next poem was read out at the service:
This next poem is to be used in the paper for her birthday memorial.
My Heart will go on by Celine Dion