Sarah, Craig and Phoebe

This page is sixth of the set of Personal Stories of Type I babies.

Phoebe inspired a beautiful CD, "Phoebe's Iceberg" ... click here for more.

Our little girl, Phoebe, was born on 13th March 1997, and sadly died at the age of eleven months, on 22nd February 1998 - just three weeks before her first birthday.

The Weeks Before Diagnosis

We first became concerned that Phoebe seemed a bit lethargic and lacked movement in her legs at the age of three and a half months. I first noticed her lack of strength, when at three months I lay her on her tummy and she couldn't lift her face off the floor. When we voiced our concerns to our health visitor, we were told things like 'she's not an energetic baby, she's so happy that she doesn't feel the need to thrash about much', etc. I think that because she was mentally bright and alert, and she did have some movement, it was hard to believe that there was anything wrong. It was when I met up with some mums who had had their babies in the same week that I'd had Phoebe that I became really worried. All five babies were lying on the floor, and I can clearly remember that two of them were rolling over, and the others who, although couldn't manage to roll over, were having a really good go. Phoebe lay quite still on the floor, smiling up at me, and it was then that I realised that she was nowhere near doing this. We became quite pushy at the GP's and basically demanded to see a specialist. We were referred to a Consultant at our local hospital, who immediately referred us to neurologist at a nearby hospital the following week. It was here that the neurologist decided that she would like to do some tests - a muscle biopsy, and gave us a date for next week.

The Diagnosis

I think I can safely say that the week of the diagnosis was the worst week of our lives. The week started with tests, and more tests. During one of the tests, we had seen the words Spinal Muscular Atrophy, followed by a question mark, on one of Phoebe's records. As soon as we got home, we looked up Spinal Muscular Atrophy and found that it said - no cure, wheelchair bound. The next few days were very difficult, not knowing what would happen. One minute fearing the worst, the next minute, hoping for the best. The week ended on the day of the diagnosis, when we were told that our beautiful baby had SMA Type I, and our world fell apart. But not for long, because we still had Phoebe, a five and a half month old little girl, who carried on just the same as before the diagnosis - as if she already knew that she had SMA. Looking back, the one positive thing that we did get from the diagnosis, was a starting point, even though we had been told the worst ever news. At least we could now plan things - special photos, holidays, etc. We could plan again, and although there were things that we now had to be careful of, we had a base to start from, now that the diagnosis was over.

Toys

We found The Jennifer Trust Toy Library great. Apart from this, we just learned to adapt toys, or to make new ones. A few of Phoebe's favourites were empty crisp packets, balloons - helium or normal, lullaby light show toys, and bits of differently coloured ribbons. Phoebe loved her bath time, as she could move her legs a lot more - the deluxe bath support from Mothercare is a good buy.

Physiotherapy

We started to do chest physio from the age of seven months, because Phoebe needed help in getting secretions off her chest. We would lie her on her back, on a slope, with her head slightly lower, the way the hospital had shown us, and patted her on the chest (front and both sides). We always sang 'Old McDonald's Farm', as this used to make the physio session a kind of fun time, and took her mind off what we were doing. We also found that it was a good idea to have a suction machine at hand, just in case she struggled with the secretions that she brought up. Sometimes when Phoebe was 'full of secretions'. We lay her on her side and patted and rubbed her for ten to fifteen minutes. This way, we found that secretions would drain from her nostrils - sometimes we didn't even have to use suction.

Suction Machines

When Phoebe reached about nine months old, she required suction quite regularly. At first, we were petrified, and didn't really know what we were doing, but quickly learnt how to use suction. Phoebe responded to suction better on her side. We always started with a large tube, and then used a smaller one, making sure we had an oxygen bottle nearby. Phoebe didn't like suction, but always gave us a big smile straight afterwards, so we knew it was worth it.

Oxygen Machines

Once Phoebe needed oxygen, we always made sure we had a bottle nearby. She never liked using masks, so we just held the tube in front of her, or attached it to her clothes with a peg. She slept in a head box filled with oxygen, fed from a machine that was plugged in, and when we went out, we had a portable set under her pram.

Feeding Time, Tubes, Pumps etc.

We were so frightened when the nurse told us that Phoebe needed a tube fitted for feeding, but within twenty-four hours it had made a massive difference to her. She had much more energy and was a lot happier. The tube didn't bother her at all. When we tube fed her, we would give her a taste by using a syringe without a needle, squiring little amounts into her mouth. When Phoebe was about ten months old, she began to be drip fed at night. The drip had a pump and it was yet another machine to get used to, but this also gave Phoebe a better quality of life. It gave her more energy to enjoy herself during the day, and less pressure on the quantity of milk she had to have.

Hospitals

At first, when Phoebe was in hospital, we relied on the doctors and nurses a lot, but as time went on, we found out that we had become the Phoebe experts, and found it was important to educate the staff on the children's ward about Phoebe. For example, we told them to make sure her bottles were thoroughly sterilised, and to be careful of cross infection, because stomach bugs and small infections would take a lot out of Phoebe, as she was so weak to begin with. Most doctors and nurses that we came across were very professional, but we did find one or two who didn't care enough about the little things. We found that it was important to say to the hospital staff, all of the things that we weren't happy about. For example, when our consultant came to see Phoebe, we found it difficult to cope with the entourage of students, etc., especially in the final stages of Phoebe's life, where we found so many people an invasion of privacy. We found it much better to see the consultant on her own, and once we had made it clear to the staff, that is what happened. We also found it very important to tell the nurses that Phoebe could not cry out loudly if she wanted something, as she had such a weak cry.

Hospices and Homecare

When Phoebe became quite poorly, we had a look around our local children's hospice, and found very friendly staff, hydrotherapy pool, light rooms, lots of toys, and also good accommodation for mum and dad. We would recommend the hospice to anyone. After we looked around, we decided that we would rather keep Phoebe at home. This was our decision, and the hospice told us that they would send an outreach nurse out to us, when required. This worked well, because it was nice to talk to someone who knew about oxygen, tube feeding, etc., and also about the difficult decisions that we had to make in the future.

Drugs Used

Phoebe had chloral and morphine. We always feared that we wouldn't know when the time was right to use chloral, but we did. The only thing that we weren't ready for, was that chloral made Phoebe very drowsy, so that she didn't know what was going on around her.

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