"Andrew and I wanted to have children but like many people it didn’t happen for us, so we went for IVF treatment and I finally fell pregnant. It was at our 20 week scan that we were told that our baby had hydrocephalus, which means there is excess fluid in the brain that can’t drain away. Myah was actually born at 35 weeks because of her condition and because I developed preeclampsia and it became dangerous for both of us.
"The day she was born as I was recovering Andrew tried to feed Myah but as she drank the formula it started coming down her nose and we knew there was something badly wrong. So, the first day of her life she was rushed into surgery because she has Tracheo-Oesophageal fistula, or TOF as it’s known, this is because Myah’s oesophagus was connected to her lungs and her food was going into her lungs instead of her stomach. It was so frightening, we had spent weeks worrying about the hydrocephalus and the brain surgery that she would need for that condition but this was new and shocking.
"Myah had the surgery – and she had three doctors operating on her - but while some babies can have the condition corrected it meant for Myah that she cannot swallow food and has to be fed through a tube. She developed an infection from the surgery which meant the brain operation had to wait until she was four weeks old. You could see how her little head was getting bigger as the fluid had nowhere to drain away so it was a relief when she was well enough to have the brain surgery which placed a drain (shunt) in her brain.
"Myah’s three now and since she was born, she has had another four brain surgeries – it’s an awful lot for such a little person.
"But she is amazing, she is such a happy child and has a wee cheeky personality. She continues to amaze me and her dad with her progress and her fighting spirit.
"When Myah was six months old, she developed epilepsy which was another thing for us to deal with and at that stage we were practically living in the hospital anyway – in fact for the first year of her life we were constantly in and out of the hospital. But it was when she developed the seizures that the Children’s Hospice was first suggested to us. At first I ignored it – sure Hospice is for end of life and that wasn’t the case for Myah! But we were convinced by the consultant that the Hospice would be a great support for us and Myah.
"A Hospice nurse came to meet us and did an assessment and talked to us about Horizon House (the Children’s In Patient Unit) and everything they could do to care for us. SO we took the plunge and went for a stay and I am not exaggerating when I tell you it was lifechanging.
"The three of us stayed and the Care Team couldn’t have done enough for us, from medical care for Myah, rest in the parent accommodation for us and every meal and cup of tea made for us. It was unbelievable – I never thought there was somewhere that would help us the way they did.
"Since then, we have been coming to Hospice and Myah loves it – we couldn’t have done without their help during the pandemic as well. It can be so isolating and overwhelming when you have a child with extremely complex health needs, but they are always there when we need them.
"Bethany is our key worker and she calls every week to check in and see what we need, she has helped us contact the hospital and get information as well as other organisations that can help us, like the Housing Executive. It sounds easy but when you have the worry and strain of a child like Myah, who can fall dangerously ill within minutes, taking the additional stress off our shoulders – I can’t even put it into words. Hospice is there for Myah but they are also there for Andrew and me and we need that support. They even set up some counselling sessions when anxiety or depression sets in, to know that we have them to turn to is truly amazing.
"Myah is thriving and although there are times – even this week – when she developed pneumonia and was rushed in the middle of the night to the hospital – we can see her developing. She has started school and although her development is slower she is crawling and pulling herself up and using her special walker. These are wonderful milestones for her and us as a family.
"I know going forward that Myah will keep fighting and I know that the Hospice will be right at her side to help her, Andrew and me, every step of the way.
"I wish you and yours a wonderful Christmas and I hope you are able to give Hospice a gift that will help them in the New Year."
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