Ellis was to be given his high dose of steroids orally every evening just before going to bed. Dissolved in a very specific and small amount of water, we gave it to Ellis by syringe - it tasted vile - we both tasted it - and were impressed that on the whole Ellis took it without much fuss. Life with a new baby continued as normal whilst the mark continued to swell and grow. We found an ingenious way to open Ellis' eye by using steri-strips above and below to hold it open. We stimulated the eye by using lights and pictures, determined not to allow him to lose his sight - until out first appointment with the eye specialist we had no idea how much his eye-sight may have already been damaged. In addition, we had read and learnt much more about the treatment of hemangiomas in the UK and overseas, and more importantly the effect that steroid treatment can have on the patient. Some of the potential side effects of high dosage steroids are:

> Bloating and swelling of the entire body
> Irritability
> Loss of appetite
> Increase in appetite
> Sleeplessness/Restlessness
> Halted development
> Gastric issues - typically GER - reflux and the errosion of the oesophagus and stomach lining
> Higher risk of infections due to compromised immune system
> Rebound growth of the mark when steroids ceased

But we also learnt that though the side-effects are scarily worrisome, there was little alternative, and though surgical intervention was an option, it was highly recommended that steroid treatment continued alongside that until the hemangioma ceased to grow and began the process of involution (naturally fading and shrinking). It was at this point that through an MSN support group, we first learnt of several leading experts in the US, Dr Milton Waner was one of the most respected and highly acknowledged that we came across. We talked and talked about the possibility of surgery and initally agreed that we would continue to adopt the UK's 'wait and see' approach

At 10 weeks old, Ellis began to refuse to feed or take any milk from a bottle. He would scream and arch his back, high pitched screaming and an absolute refusal to allow anything anywhere near his mouth. This continued for 2 days, and after eliminating any other obvious signs of illness we telephoned Dr Monk on the number he had given us. He advised us to bring Ellis to the hospital childrens ward for immediate consultation.

Upon examination by a doctor, no obvious signs of illness could be found. Aside from a refusal to feed and the discomfort of eating Ellis appeared 'normal'. It was deduced that the oral steroids were causing some discomfort to Ellis and feeding in turn heightened that pain. We were given a prescription for Ranitidine, a commonly used anti-acid, which was to be given prior to a feed and should resolve the issue. We went home that evening and began the treatment and the next feed seemed slightly better. However it was clear over the next 24-hrs that despite the treatment Ellis was continuing to experience extreme pain and would scream even at the sight of a bottle, so we returned to the hospital out of hours emergency service.

Ellis was admitted to the childrens ward. Blood samples were taken and much head scratching prevailed. Initial diagnosis was tonsillitis, though unlikely. We stayed in the hospital for a week whilst the reason for Ellis' discomfort was explored. He was given a naso-gastric tube in order that we could feed him milk as he had progressed to the point of refusing all bottle feeds. In fact, a tube-feed did show that Ellis could consume milk more comfortably so long as it went straight into his stomach, though a short time after a feed he was clearly uncomfortable. Concerns at this time were that there may be internal hemangiomas affecting Ellis and we were referred to Great Ormond Street Birthmark Clinic so that they could perform an MRI under general anaesthetic.

Upon arrival at GOSH in London, we were seen by a number of specialists. The eye specialist, using some pretty impressive equipment, was able to ascertain that although the sight in Ellis' eye was impaired it was still functioning and we could bring his sight back to normal through the use of eye-patching - we had to patch the left (good) eye for 1-2 hours per day which enforced the use of the right eye. Of course, we still had the issue of the swollen upper and lower lids to contend with and we found a wound dressing that worked better but was still not ideal. Ellis' eyesight was and still is our biggest concern.

Ellis was weighed and his blood pressure checked, another dangerous side-effect of steroids can be elevated pressure and it was arranged that a local district nurse would now visit us weekly to monitor his weight and blood pressure and keep us in medical supplies - we were beginning to look like a hospital ourselves!

The MRI fortunately showed no internal hemangiomas other than in his right ear, a heart scan highlighted a small murmur, which would resolve on its own and we were no nearer to resolving the issue with Ellis' refusal to feed.

We were seen by several of the Birthmark Team, specialist doctors and nurses, who advised that we were on the right track and reassured us the birthmark would disappear and fade, probably by the age of 10, possibly earlier. The steroid dosage was reviewed and increased in view of the continuing growth and the dosage of anti-acid was also increased in line with that. It was generally acknowledged that the refusal to feed was not uncommon following treatment with steroids because of the impact upon the gastric system. We were to continue with the tube-feeds whilst consistently offering bottles as we were cautioned that failure to offer feeds orally could encourage oral-phobic behaviour and much more long-term and serious eating issues.

This was also the first time that we felt informed enough to beg the question of surgical intervention - it was dismissed as an option and we were urged to continue the 'wait and see' approach - we came to loathe that term!

Following our visit to GOSH, Ellis' ongoing birthmark treatment was transferred to their care from Bedford. We were given a specific plan for reducing the steroid dose in a very measured and controlled way, but we left knowing that Ellis would be taking higher doses in the short term and would remain on steroids until he was approximately 9 months old.

How did we feel now? Probably as happy as Ellis looks in the photo here - we left the UK's leading birthmark clinic feeling extremely disillusioned with the UK's approach, attitude and knowledge about birthmarks. Everything we had read implied that the US were far ahead of us in research and treatment options and we felt frustrated, we felt like the only people who cared that our baby may lose his sight or at best be visually impaired. We still felt we didn't know enough about the impact upon his life. We now had a baby that for the forseeable future had to be fed through his nose, and no obvious way to eliminate all of the distress his treament was causing. We knew that we had to continue with the steroid treatment, and we wished so much that Ellis no longer had to be in pain.

We had a follow-up visit to GOSH hospital where further investigation into Ellis's food refusal meant a swallow study was undertaken - nothing conclusive other than an obvious reluctance to eat assocaited with pain - and who can blame him?! We began the slow weaning off of steroids and the final dosage day was marked in RED on the calendar - an end was in sight - not the end - but the next chapter was soon to begin.