My Story by Lucy Hardwidge
I had a very good and healthy pregnancy and I was a little upset at the thought of losing my bump but at the same time extremely excited about meeting our new arrival. I was four days overdue and with my blood pressure rising the decision was made to induce labour, so on Sunday 13th February 2005 we were admitted to Addenbrookes Hospital in Cambridge and I started the induction process that same day. We were thinking to ourselves that we would be welcoming a valentine baby into the world the following day! Hmmm, well things never seem to go according to plan and Monday 14th February came and went, still no sign of baby. Tuesday 15th February was still an unproductive day, although my contractions were increasing and very painful baby was still not ready to make an appearance. Eventually at 5.30pm things seemed to be progressing and Fay finally arrived at 4.04am on Wednesday 16th February. To be honest, I was in such a state of shock and so exhausted from the labour and immediate aftermath it didn’t even register when the mid-wife said, ‘she has a mark on her skin, but nothing to worry about!’ It was only when I looked at my husband’s concerned face that I began to worry.
We actually had a very good experience compared to some, in that Fay was born at a leading University Teaching Hospital and so I believe were probably exposed to more rare conditions than some hospitals.
Fay was born with a very large black, lumpy, disfiguring mark covering probably about 60-65% of her body! I thought babies were born with pure white, blemish free skin, well that was my experience with many friends and family members having had babies. I was so tired from the labour and the events of the previous days that I was slipping in and out of sleep and was shocked to be woken by Anthony saying that they wanted to take my baby for a scan of her head. Why? Because of the CMN on the top of her head, they were worried about the implications and whether there was anything on her brain. I was unable to go with her so Anthony accompanied her.
Problem with her brain? I was so worried and from that point my mind was playing tricks and I was thinking the worst.
We were transferred to the ward later that morning. We were visited by many specialists and students during the time on the ward, a photographer taking photos of her skin and each time someone came down to see us, the curtains were pulled round our bed and it was drawing attention to us.
Other patients on the ward were asking if everything was ok, to which I would answer, ‘yes everything is fine’. I was not at this stage prepared to discuss anything about my baby with anyone!
I was eager to get home and wrap my little family in cotton wool and not have to see or explain this whole experience to anyone.
By the time we were home I had mentally erased the birthmark from my mind and wanted to just concentrate on my baby and making sure she was feeding as she should be, sleeping etc, all the normal worries of bringing home a baby for the first time.
It was always at the back of my mind and I was just trying to get on with being a new mum and not thinking about the implications of this thing on my daughter’s skin until I had to and that was 9 days later when we returned to the hospital.
Anthony had been brilliant, very supportive, holding everything together even though I knew he was worried sick. As a new mum you feel emotional anyway, the hormones, lack of sleep etc, but having these additional worries plays havoc on your emotions and mind and you tend to think the worst of everything.
I was concerned about the many friends and family that would want to come and visit, I wasn’t prepared at this stage to see anyone; I just wanted to cocoon Me, Fay and Anthony and prevent anyone from coming in. I didn’t want to face people’s reactions, I wasn’t ready. It was only our closest family that were aware of Fay’s CMN at first and they thankfully were great, very accepting and supportive. My sister was the first family member to change Fay’s nappy at the hospital and I just handed her over with no thought to what she was going to uncover, but without hesitation Helen just whipped her off, changed her nappy and returned her with no question. The reaction or lack of reaction from our closest family I think helped us immensely in the early days.
We returned to the hospital 9 days after Fay was born to be presented with the facts of Fay’s condition. All I can recall from that meeting was the word ‘CANCER’. Thankfully Anthony took in more information than me as I seemed to sob my way through most of the consultation, I blame the hormones!! Fay had been born with a suspicious lump on her lower back and they wanted to do a biopsy and remove it immediately, just to be sure. So, when Fay was 3 weeks old, she underwent her first operation to remove the growth. How do you explain to a 3 week old baby that you can’t feed her for 6 hours prior to her op! Thank god for dummies! Thankfully she was in and out quite briefly and we then had the waiting game for the biopsy results.
All results returned as clear which was encouraging and from this we were offered a referral to Great Ormond Street Hospital.
Following this, I realised I had to just get on as usual and fight back my feelings and try to be just a mum. I would take her to clinic for weighing and strip her off as the other mums did with their babies. The health visitor had offered to come and weigh her at home, but I was offended at the offer and thought, no, I had to face this sometime and all of these experiences, however bad, had to help me become stronger in dealing with this. I couldn’t tell you if they were staring when we did go as I had my blinkers on and Fay was the only one I was concentrating on. I would normally attend clinic with a local friend that I had first met at antenatal. She proved to be a great friend and helped me carry on as normal, attending lots of local groups with our girls and allowing me to act as if my baby was no different to anyone else’s.
To be honest during the first few months I found it easier surrounding myself with new friends rather than seeing old friends. I felt I could not be judged by new friends that did not know me previously, I was so terribly guilty for what had happened to Fay that I thought our friends would judge me and think it was something I had done during my pregnancy that had caused this. I have since found out this is not the case, either with our close friends judging me or the fact that is was my fault, but I will carry the guilt with me forever, if not for a very long time. As a mother you want to protect your children and I had failed to do this.
We had, like many I am sure, had not been given any guidance on how to care for Fay’s skin so when she was 12 weeks old her skin began to break down. I rushed her to our local GP, who I have to say have been absolutely tremendous throughout Fay’s care and have accommodated us in anyway they could. They saw her immediately and dressed the wounds around her nappy area. My concern was infection in this area and my worries became reality!!! The same day I visited the GP I also called the Dermatologist at the hospital, who again has been great and has given Fay great care and attention, we have been very lucky with the medics we have encountered.
Anyway, I took her straight in to see him and he re-dressed the wounds and advised me to monitor them. On leaving the hospital the strangest thing happened, which I have to tell you about. My mum and I were queuing to pay for the car parking and an elderly lady approached us and popped her head in to see Fay in the pram. Fay was wrapped up with a little hat on, so fully covered with only the small CMN on her face below her eye visible. She said to me, I had a mark like that on my head, and pointed to the exact same position on her head, where Fay’s is!!! I looked at my mum who was with us and the lady went on to say that her mum had taken her to have it removed when she was younger, by freezing and removing it! Anyway after a brief chat she touched Fay’s head and said ‘She will live a long and happy life, don’t worry about her’. Maybe a guardian angel!
Anyway, following our visit I kept a close eye on the wounds and the next day they were getting progressively worse so we decided to take her to A&E. Within minutes of being there the small spots on her wounds began to spread in front of our eyes! I panicked and glad I did as up until this point no one seemed to be too concerned. Following a harrowing experience in A&E Fay was admitted and spent 5 days on IV antibiotics with a sceptic infection.
After a rather difficult and very emotional 6months we eventually got our appointment to see Dr. David Atherton, at Great Ormond Street Hospital who explained Fay’s CMN in great detail and answered all of our questions. The information given to us highlighted the additional health implications but we were told this could be detected by an MRI scan. So at 8 months old Fay under went for a scan and thankfully the results were clear. We were now more understanding of the condition our daughter had, the fact that at this stage it was just cosmetic and allowed us to move forward.
I found it a great help to have Jodi and her family there to support us. We attended our first family day when Fay was 7 months old and the one thing I remember most of all was what Val, Jodi’s mum said to us – ‘ Never cover her up, treat her like any other child, if you go swimming choose the communal changing area do not go into a lockable cubicle’. That has stayed with me from that moment and we have stuck to that. I threw myself into fundraising and raising awareness in the local media and found this helped me tremendously to deal with Fay’s CMN. We have had a great deal of support from all of our close family and friends, to whom we are truly grateful and I don’t believe they realise how much they have helped us both over the years.
Fay is now 5yrs and we are extremely proud of her. She started primary school last September and loves it. I looked very closely at schools in the area to be sure that she would be comfortable with the teachers and her surroundings. She has many friends in and out of school and I am so happy with the support she has received to date from all of our friends. She is becoming much more aware of her ‘Chocolate Mark’ as she calls it, but to date it has not caused her any concern. I am fearful for what the future holds especially in her school years but Fay is a very pretty, happy, confident little girl and is surrounded by friends, which I believe to be a blessing.