I was aware that the midwives were not handing her to me right away. The midwife mentioned the baby was a bit slow to cry so she was going to administer some facial oxygen and did so. Then I heard the baby cry but they still did not bring her to me. The two midwives and my husband were hovered around the corner of the room with the baby and I heard them talk about a “birthmark”. Finally, they brought her to me wrapped in a towel. I could see what was indeed a very big, dark mark on her abdomen.
The midwives left my husband and myself alone and told us they would call the consultants to look at the baby’s mark. It was not until the consultant came and examined her that I realized the extent of her mark. It was a dark brown almost black, hairy mark that covered more than half her backside, over her buttocks, upper thigh and over her abdomen and front genitalia – the area was extensive. The consultant was visibly puzzled and called for another consultant. This was the moment when I started to get anxious. The second consultant came after some time and also did not have a name for the “disorder”. She looked over the baby and very mechanically tested her limbs and pronounced she was otherwise “normal”. They told me they had never seen anything like it which was not very reassuring. They said there was nothing more they could do for the moment and that they would ask for the pediatrician to see the baby in the morning.
My husband acted as though nothing was wrong – he said nothing to me about the mark and just said the baby was beautiful. He picked up my mother and son and brought them to the hospital. He had told my mother about the mark but not the extent. It was not until my mother arrived in the evening and I showed her when I burst out in tears. I felt overwhelmed but had no words to describe what I felt. Everyone around me was acting so normal but I knew there was something wrong with my baby. It was a very lonely night in the hospital after my family left for the evening. My baby cried throughout the night but I felt too exhausted and emotionally vacant to respond.
The next morning, the pediatrician came by with the two consultants who were at the delivery suite the previous afternoon. He very objectively examined my little girl – turning her on her front side then back –and announced that what she had was “Congenital Naevi”. He explained that this was a medical term for a “mole”. It did not sink in –what she had was definitely not what I knew a “mole” to be. The consultant went on to say that there was no immediate health danger but some people believed there was an increased risk of malignancy. He knew that it required more than simple laser treatment and that he would refer us to a plastic surgeon. As it was not a life threatening condition, he said not to expect a call back immediately – it could take four to six weeks. His mouth was moving but I could barely understand the words. Mole? Lasers? Skin grafts? Plastic surgery? Why is he talking about all of this? I did not feel comforted by his assessment – instead I felt even more anxious and cried after he left. I could not even remember what name he used to describe the disorder and did not feel any more informed about my baby’s condition before his visit. He took pictures as though she were a rare specimen. He wrote a referral letter but we did not receive a copy – we had no idea who would see or when.
The next few weeks were very difficult. The challenges of post-partum recovery — managing a newborn, sleep deprivation, thinking about the medical uncertainty of my daughter’s condition, fluctuating hormones – felt to be over the top. The different coping strategies my husband and I had also added strain on our relationship. Outwardly, he showed no emotions as he was not saying anything about Pascale’s condition whereas I was overcome by my feelings – I felt like I was barely functioning during the day and then every evening after I put her down for sleep, I would cry and cry. I managed to do internet research on the CMN condition having figured out what the mole was called and it was so distressing to learn that many doctors in the US propose radical surgery during the early days of the baby’s life yet we did not even have a date to see a specialist. Should we be heading to the US for an assessment? I struggled with the question of why this would happen to our family and wondered what on earth I did during my pregnancy to cause this mishap. Life just did not seem fair. Fortunately, I was able to recognize early on that what I was experiencing was more than the normal “baby blues” and I sought help in the form of counseling from week two as clearly, post-natal depression was triggered by all the events. I reluctantly went on anti-depressants at week four and got some help for the night feedings so I could get some sleep. Bonding with Pascale was already a little slow to come due to the stress and the medication meant stopping breastfeeding. But in hindsight, I absolutely do not regret my choice. At the end of the day, my daughter and son needed me to take care of them and I had to do what I had to do to get myself back to a state where I could cope — and fast. To this day, I do not know how much of my “recovery” can be attributed to the medication but I don’t think it is important. When the “fog” I was experiencing gradually lifted, I was in a much better position to put all into perspective and enjoy life with my new baby like every mother should (those early weeks pass by quickly and no second chances if missed). Though I would not compare my ordeal to losing a child, in a way, absorbing and digesting my daughter’s condition was very much like a grieving process. I had to go through each step though emotionally painful one (denial, anger, guilt) before I could eventually reach the level of full acceptance.
After an agonizing two months, we were put in touch with leading dermatologist, Dr. David Atherton, at Great Ormond Street Hospital. Pascale has “Giant Congenital Melanocytic Naevi” also known as “Bathing Trunk Naevi”. Aside from the obvious cosmetic issues, we were concerned with health risks associated with the condition. The medical literature seems to be concentrated on the melanoma risk but of bigger concern was the possibility that there could have been abnormalities in her central nervous system. Fortunately, this can be detected early on through MRI scans. When Pascale was five months old, she had a completely normal scan. That was a huge turning point in terms of “moving on” and now we remain very optimistic that her issues remain purely cosmetic and do not involve any health ones. Given the fact that we were not advised of any procedure today that can guarantee a safe and good result (due to the risk of serious scarring, infection, the pigmentation returning), we have decided against pursuing any cosmetic surgery for the time being. We would like to hope (but do not expect) for non-surgical treatments available in her lifetime and we feel not pursuing surgery for the time being keeps her future options open.
Pascale is two years old now and she is an extremely happy, good natured, strong-willed little girl. I think of her mark as her unique “tattoo”. Our focus on-going will be to raise a young girl who will have high self-esteem, confidence and poise to deal with all life’s big and little challenges. And actually, this is no different than if she did not have her skin disorder. I think she will develop some very special qualities to her personality because of the CMN — compassion, empathy, an early lesson in life that beauty is more than skin deep. Of course, I worry about teasing and bullying. If I could just make it go away, I would. But I can’t and so we will deal with the psychological issues when and if the time comes. I think the CMN group will offer great support for her — just knowing she is not alone will help. Every parent worries about bullying these days — children get ostracized for wearing the wrong type of trainers, for being too fat, too skinny, having pimples. If Pascale did not have the CMN, it would likely be something else. I have already learned lots from my two year old — living in the moment is essential and being grateful for all that I possess – material goods mean nothing compared to my family’s well being and health. In my eyes and in my heart, I have an absolutely beautiful daughter who is perfect in every way. I am so lucky and thankful.
