Macy Mae Baker

UPDATED PLZ READ.............
For those leaving messages , photos and candles thank u so much i apologise for not returnin , Im
struggling at the minute emotionally and find it difficult being on here. Sending you all my love
Kat xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
xxxxxxxxxxxxxxxxx

To all our gts friends , Many thanks for everything all your messages . letters and cards . I may
not be around for a while as im having my puter fixed so i apologise for no candle etc . Love to you
all.

Mummys always thinking of u moomin pants and i no deep down daddy misses u more than anything not
that he tells any of us but im sure he tell u , every time he visits u . You will forever be his
special little girl .


Thank you to everyone who has supported us through this tough time , for leaving messages, lighting
candles.

Macy mae Baker was Born on the 17th May 2006 to us her family Our 4th Daughter right from the
beginning we new something was the matter with her and she was diagnosied with Full trisomy 13 and
given just days to live. She has 3 Sisters Laura 10. Chloe 6 And jazmyn 4 they all love her so so
much.
In September 2005 I found out I was pregnant with my fourth child. My pregnancy was quite straight
forward except for SPD. My Routine blood tests were all normal and at my 20 week Scan we found out
we were expecting our fourth daughter. We were so happy as everything was fine. At 34 weeks
something was different - I took a trip to the labour ward and they confirmed my water had broken so
i needed to stay in hospital. The scan also revealed my baby girl wasn't growing so they gave me a
hormone drip to start my labour. Just six hours later Macy Mae Baker was born weighing 5lb 4 so not
so tiny after all, due to her being six weeks early the SCBU (Special Care Baby Unit) doctor was in
the delivery Room with us. They said everything was fine and just wanted to give her a little extra
oxygen as she was early. I had a shower and was ready to see my daughter. We were told we needed to
see a baby doctor before we could visit. I knew straight away there was something up, a problem then
my world fell apart.
I can not explain how i felt. We were told that Macy had the features of a baby with a chromosone
illness called Trisomy-13-Patous Syndrome. We were then told if it was Patous she wouldnt make it
through the night. The 17th May 2006 was a day i could never forget. It should have been a joy but
no. I couldnt take it all in it was like i was in a dream. I did drift of to sleep and at 1am three
hours after her birth I was told by a midwife she had got worse and i should go and be with her. She
had began to struggle to breathe so they put her on a machine called CPAP that helped her. She was
hooked up to machines and they were peeping all the time it was scary, I couldnt take it in that she
would lose her fight at any time. I sat with her until morning and she pulled through. We sat with
her day and night it was hard spending 24/7 in there. Two days later the tests were back and
confirmed It was Patous syndrome and it then hit me. My baby was going to die. Myself and my husband
James had to decide if we wanted to let her die or fight for her. Well the decision wasn't ours to
make - Macy actually made it herself. She just kept proving them wrong.


Within the thirteen days in the SCBU they confirmed she was deaf, blind, had kidney problems and a
brain abnormailty plus a serious Heart defect. She also required oxygen 24 hours a day. We were
given the chance to take Macy home to die at 13 days old. So on Tuesday the 30th May at 11am we left
in a ambulance to take her home. The equipment was in the house ready for us we just waited for that
day to come. Weeks turned into months and we started to enjoy having her around even though it was
different. We celebrated her first christmas, her first smile, the first time she held her head up
then her 1st birthday - something we never thought we would see. Then on September 6th we had to
make another hard decision regarding an operation that would help with her feeding. We decided to go
for it and were told to expect complications and even death. Well one hour later they brought her
back to the ward and was released the next morning, once again proving the doctors wrong.

Im so proud of her. Macy enjoyed her second christmas and we planned her second birthday. We decided
a big party was in order. After being taken into hospital in Febuaury for a chest infection Macy was
released as it had cleared up. The next five days she was happy in herself, even went to nursery
that she loved, she loved spending time with her nurse Claire.

On the monday the day after Mothers Day she began to breathe funny so i called the out of hours
doctors who told me to call an ambulance. A chest infection is what i thought - a couple more days
in the childrens ward. I was so so wrong. Within 15 minutes of getting to hospital i was told she
was in renal failure and she wouldnt be getting better. I had to make the choice of whether to move
her to Leicester hospital and have her ventilated or leave her at Kettering and let her die. It was
so hard but we decided if it was her time then we would let her go. Deep in my mind i kept thinking
"they're wrong again - she'll be home soon". Well 12am they moved her to the ward my hubby, mum and
me sat with her until she dozed of into her sleep. I decided to go home get some food and change of
clothes. This was 1.15 in the morning. I rang the hospital at 2.30 and Macy was fine. Ten minutes
later the nurse rang me, it was the call I'd dreaded all her life - just 22 short months - it was
the call that broke my heart - the call to say she had stopped breathing. I got to the hospital at
2.42, the doctors were all crying, the nurses were and my hubby was sobbing. That day would be the
worst day of my life. Macy died at 2.40 am on the 4th march 2008 at Kettering general hospital. She
was laid to rest at Kettering cemetery on the 12th March. She rode in style in a carriage pulled by
2 horses in a little pink coffin.

. .

Macy meant the world to alot of people not just us everyone infect from people that passed in the
street to nurses that carered for her. She was a proper little princess.

M....Mummys little Miracle
A....Amazing fighter
C....Couragous
Y....Your our special Little Girl

M....Marvelous Angel
A....Always In Daddys Heart
E....Emotional times

B....Bravest Little princess
A....Angel in heaven
K....Knowing your watching over us
E....Everyone loves you loads
R....Remembering you forever

Im so proud to have you as my daughter i miss you so so much
xxxxxx