October 1, 2008. If the mood of the nation was sombre, as she marked 48 years of independence, it was much more in my home. And it all started with an unexpected early morning phone call.

“May I speak with Mrs Ojenagbon,” the sweet female voice at the other end requested.

“Sorry, she just stepped out,” I said, without any serious thought of who was calling. My wife frequently gives out my mobile phone number to her friends and customers, so it is not unusual for someone to call my phone, asking to speak with my wife. I assumed this was one of her usual business calls, since the person did not sound like she knew me, and took time to explain to her that my wife had her mobile phones with her. She could call her, if she wished, on either of them and, certainly, she would pick the call.

But before she cut the line, the lady hinted she did not know my wife; she was given our phone numbers at the hospital my wife and our children use. Then she mentioned something like hearing so much about our daughter, who was born with a giant nevus (almost everyone calls it a birthmark) extending from her head to the right part of her forehead (covering much of her right eyebrow) and going all the way to near her earlobe.

She explained that she has a daughter everyone at the hospital mistakes for my daughter, so she had been making enquiries about us. In fact, everyone in her family had been looking forward to meeting her daughter’s look-alike.

Now, my second daughter’s nevus is one thing that gave us some jitters when she was born. My wife was thoroughly exhausted after going through the ordeal of giving birth and so she was too weak to see the baby before she was taken back to the bed. As usual, I stood with the nurses who were giving my daughter her first birth. Somehow, I noticed that her ‘hairline’ extended way below the usual place, especially on her right side of the head.

“Why does she have so much hair on one side of her forehead?” I asked one of the nurses.

“It is not hair,” she responded. “It is called birthmark.”

Then I noticed she had dark poker dots all over her body which were quite visible because she was very fair. Honestly, at that point my spirit sank. I needed a quick explanation to give my wife whenever she woke up and noticed it. So began a journey that would last several months as no one could readily explain why our daughter was born with such a large birthmark on part of her head/forehead and black dots scattered all over her body. (My wife was to tell me much later that what saved the situation was that she did not see the child immediately she gave birth to her, otherwise the shock would have killed her.)

Initial counselling and explanations were given by the doctors on duty, Drs Ovie Mafuru and Felix Ogwuli, as well as the hospital matron, Mrs Elizabeth Ebhodaghe. Further investigations brought me in contact with a number of dermatologists (especially paediatric dermatologists), including Dr. Steve Shapiro – my very first internet contact who subsequently linked me up with Prof. Lawrence A. Schachner, M.D. (Harvey Blank Professor and Chairman, Dermatology & Cutaneous Surgery, University of Miami Miller School of Medicine). In no time, we came face to face with Prof. Yetunde Olumide who is reputed to be the first female dermatologist in Nigeria. Although some of them opined that it was nothing to worry about, they were however united on the need to be sure it was not malignant.

Perhaps our greatest influence and support in our attempts to find a solution to what we did not know whether or not was a big problem came from our paediatrician, Dr. Nkiru David and the Nevus Network (www.nevusnetwork.org ), which supplied us with loads of information about the condition, including countless photographs of people of all races with a similar condition. According to the Network, nevi measuring 8 inches (20 cm) or more at birth occur in about one in every 20,000 children.  Giant congenital nevi involving much of the body surface are less common, possibly around one in every 200,000.  Many people with a larger nevus will have anywhere from several to hundreds of smaller ‘satellite’ nevi scattered throughout the body.  And that is exactly the case with my daughter. 

You could therefore imagine our surprise to see, on October 1, another child, who is about three years old (my daughter will be three in January) and looks exactly like my daughter. Her mother did not only bring her to our house, they spent a good part of the day with us. You would have thought that Sharon (yes, that is her name) and Zaneta (my daughter) were identical twins. Everything about their nevi (that is the plural of nevus) is the same, including the shape, size and colour. They even both have blossoming hair on the giant nevi. The only difference is that while Sharon’s giant nevus is on the left side of her head/forehead, my daughter’s is on the right side. And they both have not been able to do without talking to each other on the phone everyday since their first meeting. Although no one can explain why some children are born with nevi, I learnt from Sharon’s mother that she has seen medical experts, not only in Nigeria, but also in the United Kingdom and the United States of America, who have all confirmed that there is nothing to worry about.

I honestly do not know what it is about the whole thing that is making my wife and everyone around us overly emotional, but I am glad that finally my daughter has found someone who truly looks like her, with the nevi and all. Believe me, it has not been particularly easy trying to convince her that she was really no different from other children. That, we were told from the very first day, would be the greatest battle we would have to fight, especially when she is grown-up.

And one thing Mrs Jummy Omolayo (that, by the way, is Sharon’s mum’s name) and I concluded is that there is a need to raise awareness on the issue of nevus. I really do not know how many parents are dying under the supposed stigma of their children being born with nevi, but we believe some efforts on the part of those who have the right information will go a long way in allaying their fears and making such children live normal lives.

Needless to say our daughter has turned out to be the most adorable child I have ever seen. That is why I cannot deny the fact that many people hold her in high esteem and sort of worship her because of her unusual ‘birthmarks’. But one or two adults have cast a scornful glance at her, even when they did not know what ‘the thing’ on her body is, with one of them hissing and spitefully walking away. And trust my wife, she returned the scornful glance to him in a full measure and accompanied it with a prolonged hiss. After all, nobody has a monopoly of scornful glances and disgustful hisses.

Below is my daughter's twin sister - as everybody now calls her.

Robot  Villager

# 1 October 1, 2008. If the mood of the nation was sombre, as she marked 48 years of independence, it was much more in my home. And it all started with ...Read the full article. Posted by Robot| 07.10.2008 08:48

delemajek  Villager

# 2 It's natural, as parents to feel a bit worried abt a child's unusual medical or physiological condition. In your case though, the reassuring words of the medical professionals who evaluated your daughter's circumstance should help your family keep & spread positive messages abt her looks. Those 'yeye' people looking scornfully @ her and perhaps those in similar categories shld desist. People with medically-challenging situations are not looked down upon in other societies Posted by delemajek| 07.10.2008 10:56

denker  Villager

# 3 Ojenagbon, my dear: ...i appreciate your effort/physical/mental exertion to propagate in the polity nevus awareness and to usher in holistic public conciousness...but, on my part, i am worried/anxious dat not enough on your side is being done to give your child the security she needs while taking a ride in your car...consider providing her a secured-child-car-seat: :idea: Posted by denker| 07.10.2008 11:34

nijalaw  Villager

# 4 Sylvester, thanks for this piece & having the courage to not only bring up this issue but also posting pictures of your daughter. She is beautiful & should be encouraged with love, care & proper direction to overcome negative & wrong perceptions the society might have about her condition. Our environment is harsh & our people are especially scared of what they do not understand or are ignorant of. It's the first time I am hearing of it but I've seen it before a couple of times but very small patches on the body & face. Truthfully it was a turn off back then when I was young, bashful & inconsiderate as strangely it was 2 damsels I was chasing at separate times. Now I'm older, wiser, more responsive & understanding to my fellow beings who have physical, mental & medical challenges. Posted by nijalaw| 07.10.2008 15:48

Gbolly  Villager

# 5 I applaud you courage to share your family situation with the world. Not only have you educated us, you have given us courage & wisdom to accept divine creation. I understand your wife emotion but with time (and prayer) she would come around. Your daughter and her friend are very beautiful. Posted by Gbolly| 07.10.2008 17:42

abayomi waheed  Villager

# 6 Thanks for this illuminating article on this rare skin disorder. I understand and share your feeling of (initial) worry and concern. But I am happy you took the right steps. Others in this condition would have being going from one church to the other looking for miracles or go where 'prophets' would have seen 'vision' and label the harmless lad a witch; or abandon the child; or go for sacrifices, scarification and concoctions. I am also happy her condition is not in the neurocutaneous syndrome of neurofibromatosis or tuberous sclerosis or others. I am much happier it is a benign condition. zaneta's skin condition (melanocytic naevi or moles) belong to the group of benign sutaneous disorders. The others are dermatofibroma, trichemnal cyst, pyogenic granuloma, cherry angioma, keratoangioma etc. The other side of the coin in these disorders is vitiligo. Please accept my kindest regards and extend same to the beautiful little angel. To Denker: The cherub in the back seat is Sharon (Zaneta's look-alike). No fault of Ojenagbon but all the same thanks for pointing out this oft-overlooked safety measure to all readers. Posted by abayomi waheed| 07.10.2008 18:48

SILOJE  Villager

# 7 Thanks all for your kind words; they are highly appreciated. Oga Denker, Thanks for your advice. Sharon's mum read your comments and explained that the child was actually in a car seat. The fact that the picture was taken in the U.S. should make that easy to believe. Thanks all the same. =denker>...but, on my part, i am worried/anxious dat not enough on your side is being done to give your child the security she needs while taking a ride in your car...consider providing her a secured-child-car-seat.... Posted by SILOJE| 09.10.2008 07:00

Soul Sista  Villager

# 8 Thanks for educating us, Siloje. The two little girls are such beautiful, precious gifts from God. They really are so cute. I cannot wait to have a daughter. One of the most fun things to do will be to dress her up in nice pinky dresses, hair decorations, and ribbons like Zaneta and Sharon. :D:D I knew a girl who had a nevus round the right side of her forehead and right ear when we were young. However, hers did not have hair on it. I remember, even though she was my sister's friend, we were not beyond poking fun about the nevus as horribly as children often do. So, never cease to reinforce to the girls how special and beautiful they are to counteract any negative body image they may get from outside. It is not only adults that can be horrible about differences, children can be pretty cruel too. If you are keen on advocacy about this issue, perhaps a good place to start will be in the classroom in their schools. Keep striving to be the best father you can be. Good on you, Siloje! Soul Sista a/k/a Soul Sizzling Posted by Soul Sista| 09.10.2008 09:06

SILOJE  Villager

# 9 Thank you very much, Soul Sis. I appreciate. Posted by SILOJE| 09.10.2008 10:48

mulan  Villager

# 10 Sylvester, Thanks for this enlightening write-up. I never knew there was a medical term for it or that it was a dermatological condition till now. The Igbos call most birthmarks including nevi 'ebum puta uwa' (I came to life with this) and I have two small ones, one on the sole of my feet. I do recall that there is some superstitions attached to nevi especially as regards reincarnation cos they sometimes reoccur in families. Mine are insignificant either way but it is good to note that some may be malignant. Thanks to you too Abayomi for those terms, I'll see how much more I can find out online... Posted by mulan| 09.10.2008 11:41