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We had a very heartwarming and successful event to raise funds for baby Nicela, which her family was so grateful for.  Nicela was diagnosed with Klippeltremaunay-Webber Syndrome.
A special thank you to Vicky who arranged this amazing event, it has made a huge difference to some lives. Read Nicela’s Story below.

 

NICELA  NAUDE

Baby Nicela was born in March 2014.  It was an unwanted pregnancy and the birth mother wanted nothing to do with her.  She did not want to know whether it was a boy or a girl, whether the baby was healthy or any other information and did not want to see her.

The biological mother received no antenatal care during her pregnancy.  She used cocaine occasionally and drank alcohol on almost a daily basis.  From the day she found out she was pregnant it was just something that had to be born so that she could get rid of it and carry on with her life.

She informed the hospital sister that she wanted to relinquish the baby for adoption.  She left hospital that night, without being discharged and disappeared.  She was tracked via facebook and threatened with arrest for child neglect after which she came forward and signed the necessary documents with the Cape Town Child Welfare Society.

For  three weeks our baby lay in hospital without the tender touch and love of a mother while they searched for her biological mother.   No one to hold her and kiss away the tears when she cries.  She lay there alone in an unfamiliar world with no one to love her.  Every time I look at her smiling face I am relieved to know that she will not remember that part of her life.

After the case was referred to the Cape Town Welfare Society, Nicela was taken in by a kangaroo mother whom I was friends with.  This is where I met this precious baby girl.

Nicela was diagnosed with a rare syndrome, Klippel Tremaunay-Webber Syndrome, which is a condition of the lymphatic and vascular systems.   She has a large growth on the left side of her upper body which extends around to her back.  She has the same vascular growth on her left arm which is also visibly deformed.  When she was initially diagnosed with this syndrome there were concerns that her left arm would be affected and would not be developed or be functional.  She was also diagnosed with congenital haemangioma, referred to as a ‘benign port-wine stain/birth mark on her left hand and partially on her back.  The poor little girl looked hideous as her upper body was more growth than baby.  There was one other thing that stood out even more than the ugly growth.  It was her beautiful big eyes and long eyelashes.  To me she was perfect.   Doctors estimated Nicela’s life expectancy at a month  and told Karin to bring the body back to Groote Schuur hospital if she dies.  Harsh words…… I still struggle to say it.

I remember thinking to myself, this poor little girl, how unfortunate can one person be.  Her mother doesn’t want her and now she has this condition which will curb her chances in life even more.  What has she done to be punished like this, she is completely innocent.   She lay there, without any emotion, just watching me.  I fell in love with her immediately.

After several visits with baby Nicela, the kangaroo mother informed me that all the parents on the adoption waiting list were contacted but none of them were interested in adopting her because of her medical condition.  My heart broke for this little girl, would no one give her a chance? Nicela was destined for house Nazareth and her chances of survival would be minimal as the vascular growth was pushing up against her airway and she could not move her head.

We took Nicela to Red Cross Childrens Hospital for an MRI scan to see what we were dealing with as we did not know whether we were hurting her when we touched her.  By this time I was very much involved with Nicela.  It however never crossed my mind that I would adopt her as I have a 21-year-old son of my own.

I met my husband, Jacques, at Bothasig Police station where we both work.  He has no children of  his own but raised my son from the age of 12 and did an exceptional job.  He too became very fond of baby Nicela and we often helped the kangaroo mom by letting Nicela spend weekends with us as she had another abandoned baby in her care already.

We went home that afternoon and after 4 hours Jacques phoned the kangaroo mom and said  we want to adopt her.  Now they are inseparable and completely in love with each other.  If her daddy is in the room, no one else exists and vice versa.    They were the best words I ever heard and I just fell in love with my husband all over again.

The Welfare society was informed the next day and the process started.  We had to go through all kinds of screenings and attend workshops.  After our application was submitted and background checks were done the Welfare Society applied for Nicela to be placed in our care while the adoption process is pending because of the medical care she needs.

Our little baby has made such wonderful progress.  She is bright and beautiful and moves her arm and hand already.  She has an exhausting physio session every Wednesday morning and the movement she now has in her fingers provides Jacques and I with much joy.

Sadly the medical costs have to be covered by Jacques and myself as we have taken her to a private paediatrician and physiotherapist, carefully selected to provide Nicela with the best treatment for the condition she has.  Nicela has been accepted on our medical aid but as with any other, there are certain procedures that are not covered or a large excess amount to be paid.

We are a middle-class family, with a middle-class income.  If only we had as much money for Nicela’s care as we have love.  Will we be able to care for her medically and will we be able to provide the medication and after surgery treatment she will require?  I knew that no matter how many times I worked out our budget and cut back on several things, we would not be able to do this on our own.

Nicela’s paediatrician tested a new medicine on her to try and shrink the growth.  She used the medicine for two months but it had bad side effects and Jacques and I decided to stop the medicine.  The paediatrician agreed with our decision and said that if the medicine had not made any difference  in 2 months, it will not make any at all.  Our other option was to see a plastic surgeon and he referred us to one.

We need to find a doctor who specializes in her condition we were told………….. nothing less.  Her life depends on it.  Nicela will bleed out within seconds if surgery was attempted by someone, no matter how good he/she is,  who does not know the ins and outs of this syndrome.  Because Nikki’s case is so severe a multi-disciplinary team had to be put together.  This is being done by her paediatrician, Professor Fourie, who will oversee everything.  The multi-disciplinary team will consist out of a Vascular Surgeon, Specialist Surgeon, Plastic and Reconstructive Surgeon, Dermatologist, Paediatrician, Paediatric anaesthetist, and intervention Radiologist.

Little Nicela is always smiling and happy and I often become sad when I watch her because she has no idea of  how painful her past was or of what her future holds.  I am so glad we found her and she found us.

Another condition that baby Nicela has is called PLAGIOCEPHALY.   Like the first one isn’t bad enough, right?  Nicela was 2 weeks overdue at birth and because of the growth on her chest, there was no space in the womb.  There was a lot of pressure on one side of her head. Nikki lay in hospital for 3 weeks, still only on one side of her body, without moving her head, again causing tremendous pressure on one side of her skull.  (feel free to google this condition).

The ideal age to start treatment of this specific procedure is 4 months and baby Nicela had her helmet made at 5 months old.  She has to wear it for 23 hours a day which secures her skull and applies pressure where necessary to mould her head into the right shape.

The only one orthopaedic surgeon who works with this condition in South Africa is based in Johannesburg.  The procedure included the cost of the helmet which she has to wear to correct the deformity of the shape of her head, which is R5000.  Because of the Vascular malformation (growth) on her chest, Nicela is not allowed to travel by air and therefore this trip had to be made by road.  More expenses.  We paid for the helmet because Nicela was at that time not yet accepted on our medical aid.

Nicela underwent her first major surgery on 1 June 2015 and again on 11 June 2015.  Her little body is bruised and very sore with a 25cm incision stretching from her chest to around her back.  A lot of the tumour was removed but there is much to be done still.  The plastic and reconstructive surgeon, Prof Frank Graewe, will only attempt the next surgery in 2016 where more growth will be removed from inside her chest and on her heart.  She is too fragile for another surgery right now, and also very traumatized.  Nikki was in ICU for 4 days with each operation and received 5 pints of blood in total.

I have taken the initiative to start a Trust fund for Nicela’s medical expenses which will have to last for many years.  If removal of the growth is successful she will need a breast transplant as well as many skin transplants as she grows into a young woman.  We don’t want to dolly Nikki up, what we are trying to do is to improve her quality of life.  She must be able to have a normal childhood and wear pretty summer dresses and play in the park with friends without having a complex or being mocked about her appearance.  She has to eat with a knife and fork and go to her matric farewell.  She must look beautiful in her wedding dress.

Thank you for hearing our story.

 

Best Regards

Jacques, Madelaine and Nicela

 

0849510310 (mom)

0834774652 (dad)

[email protected]