We found out during pregnancy at the 24 week scan that we were expecting a girl and that her bowel looked a bit more noticable than normal. We started a regular series of scans, blood tests and had many ups and downs along the way trying to determine what might be causing it.

Naomi entered the world looking totally perfect - even the pediatrician said if the problem hadn't been spotted on the scan he wouldn't have known anything was wrong.

She was operated on when she was one day old to determine what was causing the bowel to be dilated - it turned out that she had a very large bit missing

For anyone with a school biology book she had 30cm of jejunum (instead of 150cm+) which is now attached straight to the ascending colon - all of the bits in between such as ileum, ileocecal valve, appendix etc were not there at all. After speaking to the surgeon about possible causes he thinks the most likely situation is that when a foetus is developing the bowel starts to form outside of the stomach and then ends up inside when the umbilical cord is formed. He thinks in her case the missing bits were left outside longer than normal and then the circulation was cut off and those bits stopped developing.

As she was unable to feed normally she had a intravenous feeding tube placed via a vein into her heart so that she could be given an intravenous nutrition called TPN. This enables babies like Naomi to grow normally but it can also put strain on the organs such as the liver and in some children it may lead to liver failure.

During her first three months of life very small amounts of milk were introduced on several occasions but she was only able to tolerate 2mls per hour.

We decided in conjunction with her surgeons that she would be suitable for them to attempt an operation to lengthen her bowel by cutting it in half lengthways and rejoining it into two narrower tubes end to end. This operation (called a Bianchi) was performed on January 6th 2004 and since then she has been able to tolerate significantly more milk. On two occasions in the 6 weeks following the op the volume was increased to the full amount for a baby of her age but both times she started to lose weight and had diarrhea so she had to go back to less milk and more IV nutrition.

6 months on from the operation Naomi was tolerating huge volumes of milk (65mls/hour) compares with the few mls she could have before her Bianchi. She finally stopped TPN in July 2004.

Naomi's liver tests didn't improve as much as hoped when the TPN stopped so she was transferred to Kings for assessment for liver transplant. She was added to the list in September and then transferred to a hospital only 4 miles away from home.

This meant she was able to come home for visits for the first time - initially just for the day but by November we were having her at home at the weekend. Repeated infection meant her broviac line had to be removed but she's coping very well without it and her liver started to improve again.

One week before Christmas 2004 Naomi finally came home to live after 14 months in hospital!

Her liver function was still showing real signs of improvement and in January 2005 it dropped below the magic 100 and she was suspended on the transplant list.

2005 has been a fantastic year so far for Naomi - she has gone from strength to strength and finally found her appetitie for real food and started putting on weight (rapidly!!). Her liver has now improved so much that she has been removed from the liver transplant list!!