It was 2007 and i found out i was pregnant with my fourth child. i was so excited, today is the day I’m going to find out the sex of the baby, it was now January 2008. the lady doing the scan told me some bad news, your baby has a cleft. i started to cry, my poor babies face is going to be ugly, that’s all i could think. for the next week or so i would cry myself to sleep. I did get to have a couple of appointments with the craniofacial unit while i was pregnant. One was with the speech pathologist. She gave me a picture of a little girl with a cleft it was a before and after picture. i took this home and it was on the front of my fridge until i gave birth. this was so the kids could get used to seeing what our baby was going to look like. By now our baby had a name, Myleigh Gemma.
June 29th came i was 41+3 weeks pregnant and in labour. the first time i saw myleigh i didn’t think back to that day when i thought my baby was going to be ugly, she was beautiful. myleigh was born with a unilateral cleft lip and cleft palate. myleigh was in the special care nursery for 11 days. she had been diagnosed with reflux and had a blocked tear duct. i was so scared to take her out shopping i didn’t want anyone staring at her and whispering amongst themselves, i wanted to protect her from people like that. i did take her out and people did stare, but i got over it. September 29 2008 came around it was lip repair day. i was excited and scared all at the same time. i had heard stories from other parents that they couldn’t recognise their baby after the lip repair, so i was worried that myleigh would look completely different. when i got to see myleigh after the surgery she looked the same, thank god. she was a little bloody on her mouth and nose and was crying, she had arm splints and a stent in her nose. i was still strong for myleigh and she was strong too.
December 16 2008 came around it was palate repair day. i knew this one would be more painful then her lip repair and just prayed she wouldn’t be in too much pain. again she came back to me a little bloody and with arm splints and a nose stent. It took her nearly a week to eat properly again, but she could tolerate custards, yogurts and milk. well by now i was relieved that her surgeries were out the way for a while at least. 19 march 2009 came around and myleigh wasn’t herself, she had been up all night vomiting and then had a seizure. i panicked and thought what the hell is going on. she was rushed to Modbury hospital where they worked on myleigh for what felt like hours until they finally got a drip in after numerous attempts then told me i had to leave the room as they wanted to incubate her so the machine could breathe for her. once stable a team from women’s and
children’s transferred her to their hospital. she went in for emergency brain surgery and was in the paediatric intensive care unit. myleigh was diagnosed with hydrocephalus which is fluid on the brain. she had a blocked tube that wasn’t allowing the brain fluid to function the way it should and her brain couldn’t handle the pressure anymore. a week later she went in and had permanent surgery called a ventriculostomy, which was bypassing the fourth ventricle and allowing the fluid to drain out the third ventricle. After 2 weeks myleigh was allowed to come home, that was the day i saw her scar for the first time. i cried, it was huge. friends and family reminded me thought hat her hair would grow again and you wont be able to see it. in July she had her blocked tear duct unblocked, thank god this was only day surgery, but she still cried after she came back from the surgery, she was hysterical, the nurse told me some children react that way when they come out of surgery it was heart breaking to see your child that way. myleigh is coming along so well after all these surgeries and has been lucky to have recurrence of her hydrocephalus. they did a MRI scan in December 2009 to make sure which was another anaesthetic, but this time she returned to me fine no crying so that was a relief. Myleigh has had many many many appointments through craniofacial, neurosurgery and eye department. she is in the middle now of her huge appointment load before her clinic appointment, this entails seeing all her doctors, eye, brain, ears, cranio, speech, photos, her surgeons, and dental and orthodontic.
Myleigh is now waiting to go in for surgery on the 6 july 2010, this is to repair her palate. her fistula in the gum line is huge so prof. David checked it out for her and it appears that her palate has come away so it needs to be repaired. she has food and f=drink come out her nostril and she sticks her finger in the hole as it must irritate her and she ends up making it bleed. i know that this is only 2 years of her life and for a normal child this seems to be very extreme and a lot to go through but for cleft families and kids they can relate and we as parents have a connection, we can relate to what they are going through and what their kids are going through.
Thanks for reading myleighs story so far, I hope people can can a little understanding as to what cleft children and their families go through. thanks again Charmaine, mum to Myleigh.