NYAH: A BABY WITH A PURPOSE IN LIFE
Nyah: a baby with a purpose in life
Nyah’s parents, Kylie and Rodney, are enraptured with their beautiful nine month old daughter, Nyah, and have been since the day she was born in January 2011.
Nyah is like any baby at nine months of age, robust and energetic, rolling around the floor eager to get on with the task of crawling. But Nyah has had more than her share of medical challenges since she arrived in the world.
Kylie experienced a straightforward pregnancy and natural childbirth. “I loved the whole experience of pregnancy”, says Kylie. “The birth at the Mercy Hospital birthing unit was really beautiful, and Rod delivered Nyah”.
You can still hear the wonder in Rod’s voice when he speaks of the birth of his little girl. “It was all so special”, says Rod, “just a time of high emotion to be holding our little daughter”. When Nyah was delivered, Rod noticed a darker patch over half her face, but he attributed this to the birthing process.
“I could see a darker patch over half of her face. At first I thought maybe it was because the birth crowning went on for over 1½ hours. But it was the nurses who picked up that the darker side could be a birthmark”.
The next day it was confirmed that the birthmark on Nyah’s face was a port wine stain. It was explained
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Nyah was born with Sturge Weber syndrome, it usually presents with a port wine birthmark and neurological complications. Seizures, often unpredictable and prolonged usually begin early in life.
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"Once Rod and our families had the training it took a lot of pressure off me too. What we didn't want was to have Nyah totally reliant on us. Now she goes to swimming every Friday, and spends every Wednesday at either of her grandparents' places."
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to Kylie and Rod that a port wine birthmark can be associated with a rare neurological condition called Sturge Weber syndrome. Nyah also had a bulging eye which too can be associated with a port wine birthmark and Sturge Weber syndrome.
One can only imagine the overwhelmingly emotions they were feeling. “It was so hard because one minute your emotions are so high at the thrill of the birth, and then you go down so low”, says Kylie.
But Kylie and Rod are forever grateful that the hospital medical specialists wasted no time doing everything they could to ensure that Nyah would get the best diagnosis and treatment possible.
“Nyah came home from hospital with us and within a two weeks she had an MRI and EEG, light sen sor tests, and a whole lot of other tests”, says Kylie. The results of the MRI confirmed Sturge Weber syndrome. “That was a really emotional day for us; to have it confirmed, and to know what we were facing”.
Kylie and Rod came to understand Sturge Weber Syndrome is quite a rare condition present at birth. The symptoms vary greatly from child to child. A port wine stain birthmark is usually present on the face or the body; a bulging or swollen eye is often a symptom of glaucoma; seizures often start around three months of age and there can be paralysis or weakness on one side of the body. Some children also experience development or neurological problems.
Nyah was 10 weeks when she had her first seizure. “One morning when I was feeding her, I thought that Nyah didn’t look very well. I knew instinctively there was something wrong,” says Kylie. “She was slow to react, her eyes were going to the right a lot and then she was very limp – she didn’t have much movement at all. When I was feeding her about 5.00 that evening, she had a grand mal (tonic clonic) seizure. That first seizure went for seven minutes”.
Nyah was rushed to the Royal Children’s Hospital (RCH) and experienced four seizures in one day. Over the next four days in hospital, Nyah’s condition and medication was monitored, and Kylie and Rod received support and training to help them manage Nyah’s seizures. “It was midazolam [a short acting drug used for the treatment of prolonged or clusters of seizures] that pulled her through those seizures”, says Kylie.
The epilepsy nurse at the RCH did midazolam training with Kylie so she could administer it to Nyah at home, and she also referred Kylie and Rod to the Epilepsy Foundation. “That’s when we called the Foundation and I first had contact with Jean Ewing, and she visited us at home.”
“Jean explained about the different types of seizures, what we could expect when Nyah had a seizure; the types of equipment, like seizure mats, that might help, and the services, including support groups, that the Foundation has available. We also had lots of questions to ask. The thing that Jean gave to us was reassurance that we could manage”, says Kylie. “She is thorough, and comforting and reassuring.”
“I’d had a few days where I really thought I was losing it, and Rod was concerned for Nyah that I wasn’t coping. But Jean was able to reassure us that this was a normal thing to happen”, says Kylie.
Following Jean’s visit, the Foundation arranged for one of its registered nurses, Nicole Lloyd to provide training in administering midazolam to Rod and to their families. “Nicole got everyone involved and practicing. The more practice you have, the more confident you are when the situation arises” says Kylie.
“Once Rod and our family had the training, it took a lot of the pressure off me too. What we didn’t want was to have Nyah totally reliant on us. Now she goes to swimming every Friday, and spends every Wednesday at either of her grandparent’s places. If the training wasn’t available from the Foundation, I don’t know what I would do”, says Kylie.
As well as the seizure management, there are other elements to Sturge Weber syndrome that are part of Nyah’s medical treatment. She has been having physiotherapy since she was three months old to strengthen her left side. Her eyesight will be closely monitored each six months for glaucoma, and her hearing also monitored.
At three weeks of age, Nyah had the first of the laser treatments in an endeavour to help fade the colour of her birthmark. “We were told that the colour would never fade. The treatment is part of a research project, and they started on the forehead. She has had three or four treatments and each time, the mark seems to have faded. We just have to see how it goes”.
For Kylie one of the hardest things was to get the time to just be with Nyah and enjoy her. “At times we were at the hospital four times a week, and going to other appointments as well. When I did have a day at home with her, I was worried she would have a seizure”, says Kylie. “But once she had that first seizure at home with me by myself, I thought ‘yes, I can do this’ and I became more confident in myself.”
Kylie and Rod look positively to the future, despite all they have been through. “We want to give Nyah the best environment we can, so we need to be as positive as we can for her. If I have any advice to other parents, it’s to have the training, stay calm, stick to the procedures, and reassure your baby as well as yourself. The Epilepsy Foundation has been fantastic; I really can’t thank them enough”.
“We really have been blessed; others have it harder than us. We’ve been lucky because we have never felt alone. Our experience with the Foundation has been really positive; we have been in really good hands,” says Kylie
Kylie discovered from a friend that the meaning of Nyah is ‘purpose’. “When I learnt that, it somehow made sense to me. I think having Nyah has a purpose for us, and she’ll have a purpose in life.”
Written by Patrice Scales
October 2011
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