Tuesday, 16 September 2014

Hope for baby Nicela

After reading this recent story, hearing the great support from the KFM team and watching the support grow for this dear little girl and her family. I decided to ask Nicelas mom to share her story with me.  KFM link
Baby Nicela was born on 16 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 relinguish the baby for adoption.  She left hospital that night, without being discharged and disappeared.  She was tracked viafacebook and threatened with arrest for child neglect after which she came forward and signed the necessary documents with the Cape Town Child Welfare 
For  three weeks our baby lay in hospital without the tender touch and love of a 
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,  emergency mother, Karin Noonan took baby Nicela into her care.  This is where we met our precious baby girl as Karin is a friend of ours.  Karin introduced us to Nicela, as she did with the other 8 babies she had previously cared for, then she told us Nikki’s story.
Nicela  was diagnosed with a rare syndrome,Klippeltremaunay-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 befunctional.  She was also diagnosed with congenital haemangioma, referred to as a ‘benign port-wine stain/birth maron her left hand and partially on her back.  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 innocent, completely innocent.   She lay there, without any emotion, just watching 
me.  I fell in love with her immediately.
After several visits with baby Nicela my friend, Karin 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 air way and she could not move her head.  

Karin and I took Nicela to Red Cross Childrens Hospital for a 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 20 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 Karin by letting Nicela spend weekends with us as Karin had another abandoned baby in her care already.
Karin told my husband and I that the Welfare Society asked her whether she knew of anyone at all who would be interested in adopting baby Nicela with her condition, and yes, Karin thought of  Jacques and I.  She called us and invited us for coffee.  I must say, my husband turned “50 shades of grey” when she asked us if there was a possibility that we could adopt Nicela.  
It was never something we ever discussed, never thought of, never imagined.
We went home that afternoon and after 4 hours Jacques phone Karin and said, Yes 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 him all over again.  

The Welfare society was informed by Karin 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 done the Welfare Society applied that Nicela 
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 physio therapist, carefully selected to provide Nicela with the best treatment for the condition she has.  After being discharged from 
hospital, the Red Cross hospital said that they would only see Nicela after six months. 

 I am convinced that had we not started physio and moving her head she would not have survived thus far.  We have applied to have Nicela placed on our medical aid but because she is not registered as Naude yet they wont accept the application.  The Registrar of adoptions in Pretoria says the process could take up to two years because they have a backlog in their work.  Another door closed!
Nicela’s paediatrician tested a new medicine on her to try 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, Dr Bristow,  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. The MRI indicated that the lesion is in general very superficial and mainly venous (that is low pressure) in nature, which is positive.  We phoned to make an 
appointment and when we told the surgeon of Nicela’s condition he immediately referred us to Professor Zeeman at Panorama hospital, who specializes in this condition.  A break, for once, I couldn’t believe it.  What are the chances of the only doctor in SA who specialized in this condition being right here on mydoorstep.  We got an appointment for 25 August 2014.  I am so excited I wish I could make the clock tick faster.  He can fix her, he can help her.  She can wear pretty dresses like other little girls and not be mocked or pointed at, like people do now.  Our little girl will have a normal  life,  that we will make sure of.  We will do anything and everything to help her.  She is ours, our own little girl like I carried her in my own womb for 9 months.

Now we have to wait for the 25th of course.  We don’t know what the professor is charging for consultation fee’s.  We were so excited we didn’t ask.  I know we should have, but I will sell my soul to pay for this consultation.  Miracles can still happen, they have to.  
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.  Nicela’s 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 to 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 to one side of her skull. 
The ideal age to start treatment of this specific procedure is 4 months and baby Nicela is now almost  5 months old, we are running out of time.

There is only one orthopaedic surgeon who works with this condition in South Africa and this time we are not so lucky, he is based in Port Elizabeth.  The procedure includes the cost of the helmet which she has to wear to correct the deformity of the shape of her head, which is R5000.  Unfortunately there are extra costs such as the consultation fee of the specialist.  We will have to drive to Port Elizabeth to have Nikki’s head measured, then drive back again, and when the helmet has been 
prepared to collect it and then another trip for measurements and progress.
I feel completely helpless.  I need to do this for my child and I cant.  We already have 
so many other unexpected, unplanned expenses extra a month with a new baby in the house that we just can’t afford it.  Even if medical aid was approved this cost will not be covered.  I just don’t know what to do anymore and I can see that Nikki feels 
my sadness. 

 We try to hide our worries and play with Nikki like every other day but each day our time becomes less and less to help her with this condition.   I have thought of everything.  My mind feels empty.
Thank you so much, just for listening, even if you cant help.

Best Regards
Jacques, Madelaine and Nicela "

Here are the banking details, if you are able to help this dear family.
Please share with others and keep 
This dear little girl and her amazing mom and dad in your prayers. 
Banking details
ACC NO: 1390741948