THIS IS ANNA’S STORY SHE HAS A
HAEMANGIOMA

Anna was born 25th January 2000 weighing 7lb 1oz at Queen Mary’s Hospital (“QM”). When she was born we noticed she had a mark on her forehead that went down one side of her face and under her right eye. Two hours after birth she had a scan through her fontanel to make sure there was no pressure on her brain as during pregnancy we were told she had an arachnoid cyst at the back of her brain, thankfully there was no pressure. Before Anna went home, the following day, she was checked and it was found she had a heart murmur and that she would need to go to Great Ormond Street Hospital (“GOSH”) ASAP. We were devastated. At nine days Anna had her first echo at GOSH to check her heart and we were told she had a small VSD (hole in her heart) which should close on its own. We were delighted but did not know what the future held for Anna.

A few days later her birthmark began to rapidly grow and darken in colour. Her lips were so sore QM admitted her and passed a NG tube to feed her through to give her lips a rest. At four weeks old she was back at GOSH where we saw Professor Harper, he was excellent, he knew exactly what her birthmark was, a haemangioma which he treated with steroids and told us it would stop growing at about six months. Professor Harper also said that he thought Anna had “PHACE” Syndrome and would need tests. Unfortunately the haemangioma began to grow in Anna’s windpipe restricting her breathing so she was admitted to the Intensive Care Unit for eight days at the age of five weeks. The doctors injected her windpipe with steroids and luckily this worked and she did not need the tracheotomy that they thought she would need. By now her lips had completed ulcerated and were left permanently scarred and disfigured. The haemangioma was still growing fast and we had started eye patching to help with her vision as her right eye was now nearly closed. Over the next few months Anna had many admissions for GOSH and QM. Her heart got worse and we were told that she had Mitrel Stenosis (narrowing of the Mitrel Valve). Every four weeks she had an echo to check her heart. By now Anna was having 15 doses of medicine a day, she was not thriving so an NG tube was passed again to feed her through, she was fed over night through a pump and vomited about four or fives times a day. It was a very difficult time but the worse was to come.

At 12 months old Anna got Broncholitis, a child’s version of Bronchitis. She did get over this but never seemed too well afterwards. On 19th February 2001 she was admitted to GOSH again and we were told a few days later that Anna’s heart had got worse and that if she managed to get over the latest virus they would have to perform open heart surgery. Her operation was higher risk than normal as the doctors were concerned about the haemangioma that was inside her chest. They told us they were going to try to widen her Mitrel Valve and that if they couldn’t they would replace it. However, we were told if the valve was replaced she would have to be put on a medicine to thin her blood and having the haemangioma she would probably die. Two days before surgery she became so ill she was put into the Intensive Care Unit as her body could not cope any longer. Two days later she went down to theatre. Approximately five hours later she was back and the operation had gone well. We were told that the next 24 hours were crucial but they did not expect any problems. Our beautiful little girl was back with us and we just felt so lucky to have her.

She is now off of all medication and we are hoping that she will not need more heart surgery. She had two laser treatments at GOSH, who have been very supportive to us. Her vomiting stopped when she was about two years. We removed the NG tube after her echo when she was two years three months old. Unfortunately, although Anna does drink her high energy milk through a beaker now she has never eaten a meal. We are working on her feeding and we are delighted when she eats one cracker or two crisps a day. We are positive that she will eat one day.

We have since October 2003 been fund raising to pay for surgery to have Anna’s haemangioma treated. After extensive research we found Dr Waner who so far has carried out two surgeries on Anna, one in New York and one in Berlin. He has reduced the swelling above Anna’s eye and under her lip and has made her a new bottom lip. It is a hard decision to make; to have your child put through more surgery but we feel it is the right thing to do for Anna. We are going in February this year (2005) for some more laser treatment and possibly some treatment on her lips.

Anna wears an eye patch for three hours a day, she has a hearing aid for glue ear and her teeth have been affected by the haemangioma but we are hoping and praying the second set will be ok. She is under many consultants at GOSH and QM and has regular check ups.

Anna is a really brave little girl who has been through so much and we are all extremely proud of her and of our two boys Karl and James who are such wonderful brothers to Anna and have been so supportive and caring.

I wanted to write this story because I feel it is very important that parents/doctors realise that most of the time a birthmark is not associated with any condition however a small percentage are. It is very important to get these conditions diagnosed whilst the child is young so that they can be managed correctly.

If you want to find out more about Anna or her condition visit her website at: www.annasfund.co.uk.

Thank you

Gary, Annette, Karl, James and Anna Hogben