Things they don’t tell you at Antenatal Class... How many times have you heard a pregnant woman say "I don’t mind whether it’s a boy or a girl as long as it’s healthy?" I said it myself but looking back I realise that I did not have the slightest understanding of what not having a perfectly healthy baby could mean. Until Alice was born that is and my husband George and I were thrust onto the emotional and physical rollercoasterride that parenting a child with complex medical needs can bring.

Alice was born with too few nerves in her bowel to co-ordinate the muscle action necessary to move food through. Her condition is so severe that she is dependent on PN for 100% of her intake and has it infused for fourteen hours a night, seven days a week. She also has an Ileostomy and a Gastrostomy too.

At three-days old, however we were blissfully ignorant of all of this. All we knew was that our new baby had begun Things they don’t tell you at Antenatal Class... to vomit a lot. And when the vomit turned green a kind and efficient midwife packed us off to the local children’s Emergency Department. Within hours we were looking at our lovely baby through the perspex walls of an incubator in the Neonatal Intensive Care Unit at the Queen’s Medical Centre in Nottingham.

For several months Alice remained a medical mystery. Her bowel appeared to be normal but attempts to feed her even the tiniest amounts of milk, a depressing two mls an hour, resulted in more green vomiting and impressive volumes of NG aspirates.

A diagnosis of Pseudo-Obstruction as a result of Myenteric Hypoganglionosis (too few nerves) finally came in January of this year following an operation at Great Ormond Street Hospital to create a much-needed Ileostomy.

Alice was discharged from hospital in mid-February on Home PN after fourmonths in hospital but was back in two-weeks later with a suspected line infection. Then another bowel operation and yet another to re-site the central line. This pattern has continued and to date Alice has never spent more than two consecutive weeks at home without being rushed back in to hospital following a high temperature or a problem with either the central line or her bowel. Why do these things always seem to happen at three in the morning!

Despite all this Alice is a happy little girl with an amazing ability to bounce back from any knock she takes. In between hospital stays she enjoys ‘Music Time’ and ‘Soft Play’ sessions with her friends. She gives us the strength we need to carry on when things are tough.

The journey we are on with Alice is not an easy one and the future is unclear, and whilst it is hard to live with the threat of liver damage and the risk of sepsis which PN brings it is also the thing which keeps our little girl well and growing and for that we are profoundly grateful.

So now when we are out with friends whose babies are eating and a wellmeaning stranger asks if Alice wants some food I say "No thanks she’s already been fed." And its true, she has.

JO-CHRISTA TAYLOR MUM TO ALICE EDIE TAYLOR – AGED NINE-MONTHS