Read about Dannielle's short bowel survivor story from her mum Joanna.
Hello, my name is Joanna and I’m 33 years old, single and mum of Dannielle.
In February 2007 I was 32 weeks pregnant when suddenly I started to bleed heavily. A recent scan had indicated that I might be Placenta Previa (when the placenta is blocking the cervix – often this requires delivery by Caesarean Section). An ambulance took me to North Manchester Hospital where I remained under observation over night.
As I had gone there in rather a hurry, mum brought my toilet things the next day and stayed with me while they decided what to do. I was sent for another scan and at this point the Sonographer informed me that there was a problem with the baby’s bowel and that she would need surgery within hours of being born.
By mid-day I had gone into labour which was a big problem as North Manchester was not licensed to deliver babies at 32 weeks. The Doctors hunted furiously to find a suitable place for us, Fairfield at Bury, St Mary’s and Hope Hospital – to no avail. They were even considering Leeds, Sheffield or maybe London, with the intention of keeping her inside me until we were in the right place.
That evening it was decided that they could wait no longer – they had to get her out!
Mum was sent for and I was taken to theatre to deliver her by Caesarean Section after being given an Epidural to deaden the pain.
Soon my beautiful baby girl was born and I named her Dannielle.
The next morning Dannielle was taken to the Neo-Natal Surgical Unit at St Mary’s Hospital. Once there she underwent surgery to ascertain the extent of the problem.
It seems that Dannielle was born without any small bowel and in fact there was no connection at all between the short bowel and the large intestine. This effectively meant that she had no way of gaining any nutrition. The surgeons were marvellous! They were able to fashion a short bowel from the tiny sack-like ending where the short bowel should have been and attach it to the large intestine. This was her only chance. Now all we had to do was wait to see if it was successful!
Dannielle was now fitted with a long-line into a main vein so that she could be fed specially prepared nutrients to keep her alive (T.P.N. Totally Parenteral Nutrition).
I really wanted to breast feed her. I did try for a time- but as she was premature I didn’t produce the milk and had to give up the idea.
As with most babies with short bowel she got several line infections and had to go back into the incubator. This upset me greatly at the time as just when I thought we were getting somewhere, back she went.
It was some time before she was transferred to Booth Hall Hospital where she stayed until she was almost 9 months old- this separation was not a good time for either of us and I wondered if I would ever get my baby home, and how would I cope!
I was told that before she could be at home with me I would have to learn how to administer T.P.N. This seemed quite daunting at first after watching the nurse do it but after a few weeks training and practise, I had got the hang of it and at last she came home. It was September 2008.
I had everything ready or so I thought! But it was such hard work as Dannielle needed such a lot of attention. She was constantly being sick and when she needed her nappy changed she would need bathing and a complete change of clothes. I was up several times in the night to change her - I was exhausted! Something needed to be done! So back she went to hospital for more test and observations and eventually she did come home and spent her first Christmas at home with the family.
Like most children on P.N. Dannielle did get line infections. It was one of the thing we were told would happen for sure and on these occasions back into hospital we would go to be treated with antibiotics. Eventually Dannielle was fitted with a Gastostomy so she could receive special milk feeds. Things began to settle down and she began to gain weight. Dannielle enjoyed her first birthday at home we had a small party with family and friends which she loved. Gradually the number of nights she was on P.N. was reduced over a period of time.
I was encouraged by the Speech Therapist to give Dannielle tiny tastes of food by smearing her lips. She would then lick her lips and get a taste. It was a slow process but eventually she started to eat small amounts of food first licking and then eating by sucking tiny bits and sure enough she started speaking too!
Dannielle was smaller than average for her age, weighing only 10.3Kg. Soon the time came when her PN came down at two nights a week and then the Doctors decided that maybe we could try taking her off PN altogether. I must admit, I was quite scared at the prospect but went ahead with it. After a month and a half Dannielle had lost about 2Kg in weight and was very poorly so she went back in to hospital where she was put back on full PN until she had regained weight.
Now it became clear to me that a long term solution was needed if Dannielle was ever to live a normal life without having to rely on her Gastostomy feed and P.N. Now she was three years old with the possibility of Nursery and School looming. In every way she was ready for this – she could already count beyond 10 and recognise the numbers. She loved storybooks and remembered the names of all the characters on T.V.
It was at this point that I asked to be referred to Mr Antonino Morabito a Consultant Specialist Paediatric and Neo-natal Surgeon at Manchester Children’s Hospital who specialises in Bowel lengthening surgery. A technique first pioneered by Mr Adrian Bianchi in Manchester in the 1980’s.
On January 21st 2011 Dannielle was finally accepted for a bowel lengthening operation by Mr Morabito. She had what is known as a ‘step-procedure’ which both lengthened and tapered her short bowel in order to make the bowel work more efficiently.
Clearly, Dannielle will still need to be on PN for some time yet. First we must wean her of her gastostomy feeds and get her eating normally. At present she is on a Dairy-Free diet and learning to eat again. It’s not easy - as the one thing she loved was cheese. Fortunately we have been able to find a substitute. Eating though is not Danielle’s strong point but with encouragement we will get there!
She is now attending Nursery five mornings a week and loving it! She eats snacks and lunch with the other children, which has given us hope that she will eventually feed herself in the normal way.
Finally I would like to thank all the Doctors and Nurses at Manchester Children’s Hospital especially Mr Antonino Morabito for his wonderful skill and determination to help Dannielle. Also to Jane Roberts who has been a constant source of help and support to both me and Dannielle.