Helaina's Story Page 1 of 3

After waiting 8 long years for a child I finally fell pregnant. I went for a scan at 16 weeks and they thought it might be twins as I was so big but when they scanned me, I knew from her face that something was wrong. I had waited so long for what should have been a wonderful time, the Doctor came in and said I had a lot of water and something was wrong with my baby so they did an amniocentesis there and then, to check for downs as I was 38.

They would let me know in 2 weeks and we went away heartbroken, it was the longest 2 weeks ever, then came the phone call, no its not downs, we don’t know. Best of all it’s a girl, so I thought she’s going to be special.

I wanted a name people wouldn’t forget, so I put Helen and Spain’s Elana together and decided on Helaina, as she was now a person and I was so desperate for a girl, Helaina it will be I thought.

We had a special team at St Mary’s, my lady consultant Bron, my geneticist and radiographer Col and me, we all formed a lovely relationship. I was at the hospital for tests and scans every 2 weeks and as time moved on they wondered if it could be ‘Arthogriposis’ where the limbs are twisted and arthritis is there from birth, it was horrible.

I grew and was so healthy, it tore us in two with the upset, then no it wasn’t arthrogriposis, she had twisted limbs, a big head, lots of fluid but we don’t know how bad she would be, at 28 weeks they advised me to have an abortion. Oh no after 8 years, and coming so far I may never have another child, no, I wanted this baby so much whatever she was we would love her.

At 37.5 weeks I was so big they thought she’d be 10 pounds, they said she may not breathe when she comes out, she could die. So I had an elective C-section at 37.5 weeks. Helaina came into the world at 7lb 10oz and a full head of dark brown hair she seemed perfect, she had a huge team standing by to check her, she was with me through the day, and in the evening she couldn’t suck and wouldn’t feed.

So it was off to intensive care where Helaina was fed with a nasal gastric tube. At the same time Helaina was , diagnosed as failure to thrive and spent 6 weeks in the special care baby unit. After 2 weeks she developed major heart problems (Hyper Tropic Cardiomyopathy) and all the Doctors were round her cot. I remember standing there screaming but they managed to stabilise her, had she been at home they told me she would have died.

We both came home when Helaina was 6 weeks old and I used to spend 5 hours a day feeding her and she had projectile vomiting until she was six, but I would not have a NG Tube up her nose, or a button in her tummy to feed her, I sent all the staff away and with time and so so much patience, we got there.

The first diagnosis came from our geneticist Bron at 3 months, Helaina was the 23rd child in the world to be diagnosed with Costello Syndrome, and there was very little information at the time whivh proved to be no help at all.

Life was all sickness, washing, crying and sheer exhaustion. I went back to work full time after 10 months, as I had dreadful post natal depression but life went on.

When Helaina was 2 she would hold her leg in her hand a scream on and off all night. We had 2 trips to the GP and 2 to the local hospital. " its only constipation" they said, they gave her a rectal washout and packed us of, neurotic parents they probably thought. This went on for a month, we were so tired we could hardly function, it was getting worse.

I took her to our GP again, who said go to the hospital and don’t come out. Something’s wrong but I don’t know what. So of we went to Booth Hall hospital and the same, "it’s constipation" again, I’d had enough so I turned and told the doctor what I thought. I had had enough of the hospitals incompetence and stood there and screamed, and till you admit her, I’ll carry on screaming.

Oh well, they were so taken aback we went to the ward, we’ll give her something to flush her through but she screamed all night, no pooh, alarm bells at last, they rang round the hospitals for some expert help and later on that day a team of 5 top people came, they did an X-ray and a full examination and she has Cancer in her abdomen, a huge tumour, well they got an ambulance and escort then got us to Pendlebury childrens hospital so fast our feet didn’t touch the floor.

If you had not insisted she stays she would be dead they said. She had a huge soft muscle tumour in her abdomen called a Rhabdomyasarcoma they told me. Going on to the Cancer ward and seeing all the bald happy children running around made me feel better. Next day they did so many horrible tests prodding and poking her. I took her and sat in our cubicle and couldn’t stop crying it was so awful and so strange, like being on another planet. We had been in a week for the first lot of chemo and as the days went on her tummy got bigger and bigger and her hair fell out. Her tummy measured 60cm round, she was so thin and sick, she looked half starved.

Then the doctors decided that she was so sick she would need an operation to see what was going on. The operation that should have been quick and easy took over 10 hours. The chemotherapy had shrunk the tumour and it was mostly dead so they removed 95% of it all.

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