Remembering Natalie

by Peter Butko

Click on the image for a larger view

Peter and Natalie Butko

Natalie was born on the 8th December 1982. She was very fragile from the outset and we saw that there was a problem with her. She slept most of the first six months. There were times we would look into the cot to see whether she was alive, she was so still. Alice and I had to get up every two hours to feed Natalie. She didn't have the strength to be breastfed and she couldn't even suck out of an ordinary bottle. We needed to enlarge the hole in the nipple of the teat of the bottle so that she could drink. She'd have a few drinks and then she'd need a little bit of a rest and then try some more.

Natalie had what's called the Prader-Willi Syndrome but on top of that she also had a severe case of scoliosis. When she was two years old Mr Ian Torode, the surgeon, said that she needed an operation pretty urgently otherwise it would become pretty severe and would restrict her walking and also possibly breathing with her lung being squeezed. There was a Harrington rod placed in Natalie's back to try to prevent the curvature and to try to perhaps maybe get it better. Over the years Natalie needed to have an operation about every eight or nine months until she was about fourteen years old when it was decided that it wasn't helping anymore so the rod was then taken out.

Initially, Alice went for the first few trips down to Melbourne with Natalie but after a while it got a little bit much and Alice had the other two children, John and Kathy that were still young, so I started going down with Natalie. On my first trip I was very apprehensive about having to stay with Natalie at the bedside. It was something that I'd never had to do before. After the first half-hour it went along pretty well.

After one operation, when I think Natalie would've been about four or five, a few days after the operation, after she'd been released from hospital, she started to have some pain in her back. At one time it must have hurt her so badly that she actually wet herself. So I took her to the doctors here in Albury and also to the Base Hospital and nobody was able to see what was happening. Then I saw a little red dot. On further examination they found that there was an infection and it actually was going inwards into the body and not outwards as you'd generally expect. So she was put on pretty heavy antibiotics. Then we needed to go back to the Royal Children's Hospital in Melbourne for observation. The surgeons there said that if the antibiotics didn't do the job, they would have to operate again and take the Harrington rod out and let the wound heal up and then have to start all over again. Fortunately the infection did subside and Natalie started to recover. For a couple of the days we were there at this time it was quite pleasant because we weren't really worrying about any operation or anything. And Natalie always enjoyed visiting the hospital. It's a lucky thing in one way that she loved the doctors and nurses. When she had to go to hospital she knew what she was going there for, but she never complained for having to go.

During this particular visit, lunch had been brought around, and I was about to feed Natalie in her cot, when she pushed the meal aside and got out of bed. There was a little boy over the other side of the ward who would've been about eleven years old. He had severely malformed feet and legs. One of them had been operated on to try to correct the faults there. He was just sitting there in bed, very quietly crying to himself. Natalie just walked over to him, picked up his hand and kissed it. The little boy just said, "Thank you, Natalie." Seeing this had me in tears, and as I turned to the door behind me, there was a nurse standing there weeping as well. Her remark was "Poor little thing she has so much pain of her own but she is more concerned about someone else's hurt."

Natalie had the characteristic of concern about those who were in pain or who were unwell. On another trip to Melbourne for an operation, Natalie, who was about twelve, made friends with a sixteen-year-old girl whose name was Michelle. She was in the ward where the heart patients were. Michelle was waiting for a heart donor. Natalie became very close friends with her. Whenever we went down to Melbourne, no matter what reason, whether it was to visit the doctor or the hospital or the Prader-Willi Clinic where we'd get together with other parents [so we could] speak with people who had similar problems that our Natalie had, Natalie wanted to go and visit with Michelle. On one visit to Melbourne we went up to the relevant floor and went over to where Michelle's ward was, and found her bed, but it had been made, there was no one in it. We saw the nurse and asked her where was Michelle. She informed us that Michelle had passed away a week or so back. Very rarely would Natalie cry, but when she heard this, she started to cry she just couldn't stop. We wanted to contact Michelle's parents because I had a photo of Natalie and Michelle together and I was hoping to send it to them. The nurse said their policy was not to give out addresses and telephone numbers, but at the distress of Natalie, she relented and gave us the number. Unfortunately, we just couldn't get on to Michelle's mother. I tried many times.

Natalie used to enjoy going to Cooinda playgroup before it became pretty big. It's pretty involved now, but she was one of the early children. The most enjoyable thing she looked forward to was the pony rides. There was a gentleman by the name of Ray and his wife who came around with a pony named Chloe. Natalie so looked forward to going for a ride on Chloe. After a while, Natalie got involved in Riding for the Disabled. She loved that. It was on Saturday mornings. There were certain ponies that she used to look forward to riding on. Bub was her favourite pony.

Natalie used to also love swimming. She used to love going down to the Murray River here at Albury. She used to love playing a particular game. I know this may be trivial, but it was important to me. As a parent it was one little thing that I was able to do to give her a little bit of enjoyment in life. Natalie loved to hold hands with me and then just go under water. As she'd cry out: "Water baby!", I always referred to her as my water baby. Whenever she'd come over in summertime, I'd take her down to the river. She'd love doing that, just going under water.

Click on the image for a larger view

Natalie at the pool with mum, Alice Price

She enjoyed going to the pool as well. Alice, her mum, had her going to swimming, hoping that it would help and strengthen her lungs, because it was very difficult for Natalie to exercise in some positive sort of a way because of her weakness within her body, she wasn't very strong. And so we used to take her to the swimming pool here. It was a burden on Alice. She wasn't very financially well off, but she made sacrifices so that Natalie could go to the swimming pools to be able to practice there, and hopefully have a better life.

For the Complete Story...
Contact: Cooinda Family Support Group