Remembering Brogan

Name: Brogan Ayre

Location: U.K.

Form of EB: Junctional EB with Pyloric Atresia

Born: March 28, 2000
Died: February 4, 2001

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.

Brogan with mom Diane during Christmas 2000

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.
At this time we still had no idea how serious this was. No other family members suffered with this, we had heard of a disease where the skin blistered to the touch but we didn't care as long as she was ok and had pulled through her operation. We thought that as long as that's the only thing wrong with her, we'll be ok, surely there's a treatment for it (or so we thought).
Then the Friday after he birth, myself and Brogan's nanna were passing a book shop and decided to have a quick look at the medical books there. We were shocked to say the least when we saw a picture of a child covered in blisters. Underneath the picture it said that this case had proved fatal. We went straight home and looked it up on the Internet, and it was Silvia's web site that I came across first. We were absolutely devastated to say the least. At this point we knew there were three kinds, and so we started praying for the mildest kind of simplex, or even better, that they had got it wrong.

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 local paper.
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DOWEY-AYRE Welcome home to Brogan, born March 28, 4lbs.3ozs.
Ever grateful thanks to the Newcastle R.V.I. Neo Natal Unit and Sunderland Royal Neo Natal and a very special thank you to Jackie Denier, Great Ormonde St. Hospital and a great relief to both sets of parents.
Lots of love from cousins Amy, Jack and Joseph.
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It was during the next 6 weeks Brogan had her best times. She was home three weeks before she even got a single blister. There was nothing we couldn't do with her, we kissed her cuddled her, put her in frilly dresses. We where convinced she had EB really, really mild. This was even the view of Jackie Denyer (Brogan's EB specialist).

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.

MIRACLES
We prayed for a miracle
And finally we were blessed
But when she first arrived with us
She was in quite a mess
So we picked up all the pieces
And put her back together
And when we looked into her eyes
We knew she'd live forever
We hope that God will find the love
To make her better just maybe
But one thing is for sure
She'll always be our special baby

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...
Brogan's death also affected the nurses badly who had loved and cared not only for Brogan but for her mam and dad Diane and Paul who also stayed at the Hospital all the time Brogan was in there.
Just after Brogan died Amy wrote another poem which we framed with a picture of Brogan and gave it to them. How could we possibly begin to thank them for what they done. They will always have a special place in our hearts forever, and we will be forever in their debt.

THANK YOU
You watched over our baby
You kept us going strong
You were our guardian angels
You could do no wrong
For all the pain and grief
For all the laughter and the fun
We're just trying to say thank you
For all the things you've done

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.
They are going through a really bad time at the moment, and are struggling greatly to cope with life without Brogan, and needless to say the rest of the family misses her so so much. You just cant put into words what losing someone so precious does to you. We loved every ounce of Brogan and she was well worth every bit of worrying she brought to us, but we are so thankful that nothing else can ever hurt her again. It will always seem so cruel to me everything she went through. And there's times when I think the only thing keeping us going is the thought of seeing her again one day in a better place.

Here are a few more poems Amy has wrote.

SWEET DREAMS
Our baby is an angel now
She's happy and carefree
Our baby is with God above
She's where she wants be
She wouldn't want us to be sad
And so we mustn't weep
For in our hearts we'll always know
Our baby's just asleep

This next poem was read out at the service:

HAPPY NOW
No more blisters
No more tears
No more worries
No more fears
I'm happy where I am up here
But I'm always watching don’t you fear

BUTTERFLY
Hello my little butterfly
I'm just checking you're O.K.
Hello my little butterfly
I just stopped by to say,
You're always in our hearts
You're always on our minds
We don’t remember the sadness
Just all the happy times

This next poem is to be used in the paper for her birthday memorial.

MISSING YOU
It hurt so much to lose you
We miss you more each day
You were so special to us all
In your own special way
I know you miss us just as much
But there's something you should know
We'll never ever stop loving you
And we'll never ever let you go

Email Brogan's aunt Rachelle