My Story

In September 2005 I found out i was pregnant with My 4th Child, My pregnancy was quite straight Forward except For SPD . My Routine blood tests were all Normal Then at my 20 week Scan We found out we were expecting our 4th Daughter. We were so Happy as everything was fine. At 34 Weeks Something was different and i took a trip to Labour Ward 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 6 Hrs Later Macy Mae Baker was Born weighing 5lb 4 so not so tiny after all, Due to her being 6 weeks early the SCBU (Special baby care 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 Dr 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 3 hrs 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 breath so they put her on a machine called C pap that helped her, She was hooked up to Machines and they were peeping all the times 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, 2 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 discission wasn't ours to make Macy actually Made it herself she just kept Proving them Wrong. Within the 13 days in Scbu they confirmed She was deaf, Blind Had Kidney Problems and a brain Abnormailty Plus a serious Heart defect. She also required Oxygen 24 hr 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 Xmas Her first Smile, the first time she Held her Head up then Her 1st Birthday something we never thought We would see. Then in September 6th we had to make another hard discussion regarding a Operation that would help with her Feeding. We Decided to go for it and were told to expect complications and even death well 1 hr 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 , and it breaks My Heart Knowing that she will lose her fight one day but until that day i will enjoy her being in our lifes.

By Kat Baker, Macy's mummy.

Here she is our special little girl.



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