Joy for the baby who clung to life

140910. Cape Town. Jaques and Madelaine Naude with their 6 month old adopted Nicela Naude who was born with Klippel Trenaunay Weber syndrome. Picture Henk Kruger/Cape Argus

140910. Cape Town. Jaques and Madelaine Naude with their 6 month old adopted Nicela Naude who was born with Klippel Trenaunay Weber syndrome. Picture Henk Kruger/Cape Argus

Published Sep 15, 2014

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Cape Town - Her mother abused cocaine and alcohol while pregnant, and when Nicela Naude was born with a large growth on her chest, neck and arm, doctors gave her just one month to live.

She could barely breathe and for three weeks Nicela lay in Groote Schuur’s neonatal unit, with nobody to give her motherly love or even a tender touch. Her mother wanted nothing to do with her, and didn’t even want to know the sex of her baby when she was born. All she was prepared to do for Nicela was give her up for adoption.

Even health workers were scared to touch her, fearing the scars on her body, which restricted her breathing as well as her head and arm movements, might be painful.

Nicela was born with a rare congenital condition, Klippel-Trénaunay syndrome , which affects the formation of blood and lymph vessels. The condition is also characterised by a port-wine stain or birthmark and, in Nicela’s case, poor blood circulation to her left arm. Six months later, after being turned down by 80 families on the adoption list, Nicela finally has a place to call home.

After spending three months with Karin Noonan, a Cape Town Child Welfare emergency mom, an Edgemead family took the five-month-old into their care. Her adoptive mother, Madeleine Naude, a supply-chain manager at Bothasig Police Station, vividly remembers the day Noonan, a family friend, asked her and her policeman husband Jacques to consider adopting Nicela.

“She sat us down and told us that none of the parents on the adoption list were interested in adopting her due to her medical condition. The only option left was for her to be taken to Nazareth House or to be put on an overseas list. My heart broke that no one would give this little girl a chance,” Madeleine said.

The Naudes had already fallen in love with Nicela through assisting Noonan, but adoption had not crossed their minds.

“We never thought that one day she would be ours. I have a 20-year-old son so adoption was not something I’d considered. We were in love with Nicela, but my husband was worried about the financial implications… so he wanted to think about it first. We knew that treating her condition would need a lot of financial resources which we didn’t really have.”

But four hours later, Jacques, a warrant officer at Bothasig Police Station, agreed.

While he admitted adoption was the “scariest decision for me”, he said “now I know it is one of the best decisions that I’ve made in my life”.

“Having a small baby in the house with such a complex medical condition scared me a bit, but it felt right to go ahead with the adoption. It should have taken me 10 minutes to say yes. Nikki is the most adorable baby… her smile and sunshine nature just light up the room.

“You can’t help but fall in love with her. The two of us are inseparable. I never thought this would happen since I never had kids of my own. She is my first baby, and I love every minute of it,” Jacques said.

The adoption has gone through successfully, but the medical bills for the couple - and Noonan, “who promised to walk the road” with them - have already started to mount.

Not only did they have to get a private paediatrician and a physiotherapist to correct Nicela’s stiffened body, they also had to get a special orthopaedic helmet to correct another medical condition known as plagiocephaly, or “flat head syndrome”.

Because of her deformed upper body and the fact she was two weeks overdue, there was no space in her mothers’ womb, putting pressure on one side of her head. The abnormality was exacerbated by the fact that in the first few weeks of life she had to lie on one side due to the stiff head.

After a struggle with medical aid, Nicela has finally been registered. In a year she is expected to have a series of operations to remove the malformations in her upper body. Doctors told the family the surgery would have to be done in six phases as Nicela was still too small for one major operation.

“I can’t wait for the op to be done so she can wear pretty dresses like other little girls,” said Madeleine.

“But we will take things one step at a time. All we are focusing on now is giving her love, which she never got in the first weeks of her life. She deserves it.”

Noonan said she had seen that love was already making a difference in Nicela’s life.

“When I took her from the hospital the nurses asked if I was sure of what I was doing. I said yes. Even the doctor who discharged her didn’t hold much hope.”

“But through love Nicela is still with us today. She can freely move her head and left arm, which was stuck behind her back for full three weeks, thanks to the physiotherapy and the love she’s getting.”

* To follow Nicela’s progress and give her support, go to the Facebook page “Baby Nicela Fund”.

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Cape Argus

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