My lovely niece Helena lives in South Africa, one of the places I expect to be visiting in August this year. This is her story and the reason I have included her web address for anyone interested. I'll let Helena take over from here...
HELENA'S STORY
As you know, our precious baby Joel was a miracle baby! In July 2008 I nearly lost my only ovary and my Doctor rushed me into surgery and saved it in the nick of time. At the age of 18 I lost my left overy when my fallopian tube twisted, cutting off the blood flow. It is so bizarre that nearly eight years later the same thing should happen to my right ovary. I feared that I would never be able to have my own children. Why is it that what we fear most always seems to come about?! God showed me that the weapon against fear is love: "perfect love drives out fear" (1 John 4:18). Through everything I have been through I have learned to hold my Heavenly Daddy's hand and trust Him.
My baby was born with a cleft in the soft palate. The emotional journey has been hectic, but we are doing so much better now. As a parent, you have so many questions and in the beginning, I battled with blaming myself. We did not know anything about cleft lip/palate's as it does not run in either of our families. When we were searching online, all the info that we could find was from overseas. One day I walked into an Art Gallery and mentioned my story to the owner (an absolute stranger). I learned that her friend's baby was also born with a cleft in the soft palate. After meeting with this fellow-parent of a cleft baby, I felt so relieved! I knew that God had set up my walking into that Art Gallery and the fact that I shared my story.
We decided to travel to Cape Town to Dr Dirk Lazarus, a renowned Plastic Surgeon, who runs the Cleft Lip/Palate Clinic at the Red Cross Children's Hospital. This was a traumatic time in our lives. Preparing for my six-month-old baby to go into theatre, then watching him wake up from the anaesthetic and monitoring his pain was not easy to cope with. We discovered that having a cleft baby is a journey, not an once off operation to fix it all. In addition to having the primary repair operation, we had to learn how to use a special-needs bottle, find a responsible care-giver for the days when I had to go back to work. Depending on the severity of the child's cleft, there remains the possibility of needing multiple operations.
After repairing the soft palate, it is tricky to feed your baby, so used a syringe. It hurts them when they swallow. Shame! Then when they are older, they could need speech therapy and orthodontic work. Unfortunately, with a cleft in the soft palate, it is not possible for the baby to breast feed as they are not able to create the vacuum to suck as hard as is needed. We have found out so much and go out of our way to make Joel suckle from his bottle to develop his facial muscles as this will help with his speech when he is older.
Joel is almost ten months old now. He is drinking from a normal Avent 4flow bottle. He is a real 'monkey nut' and loves his Mommy and Daddy! He goes to a normal creche. He loves life! In November 2010 we will travel to Cape Town for his check up and are trusting God that all will be fine and no further surgeries will be necessary.
I work with a lady who was born with a unilateral cleft lip and cleft of the soft palate. Madge is now 38 years old and successful. We both have a passion to help parents and people affected by cleft lips and palates, as we have walked the same road. Madge has had a profound refelation about being "fearfully and wonderfully made (see Psalm 139: 13-18). She used to believe that God made a mistake, but through her walk with the Lord, she has been made whole and knows that though she was born with a cleft lip/palate, it was not God's mistake.
So... together, we have started a South African website and are in the process of creating awareness about cleft lip/palates in our community.
WHAT IS CLEFT FRIENDS.........
Cleft Friends was born in 2009 out of a need to support parents in South Africa with babies born with cleft lips and palates. We are based in Port Elizabeth in the Eastern Cape and are a non-profit support group organisation. Our aim is to be a friend to parents and children affected by cleft lip/palates by meeting them as soon as possible after the birth of the affected child, supporting them emotionally through the various operations and connecting them with healthcare professionals in their area. Our vision is to create awareness about cleft lips/palates in our community and provide special-needs bottles for babies born in underprivileged areas. To our knowledge, there is no similar support group in South Africa, so this fills an enormous need. Because of this lack of other help, we have even had medical personnel contact us and ask us to visit people desperately in need of the encouragement we can offer. We already have two Moms in Humansdorp, one in Uitenhage, and two in Kwazakhele Township in PE. As we are not medical professionals and don't pretend to be, we can only share from our experiences and refer parents to the appropriate professionals in their areas. So many people in this position have to rely on anecdotes on how to cope and make the best they can of it.
It doesn't cost to be a friend. As Born Again Christians, we believe that we are filling a gap in our community and sharing God's love with practical advice where it is needed most. In the rural areas of South Africa, cleft palate babies are shunned from their communities in the belief that they are cursed. Our goal is to bring awareness and hope to parents and people affected by clefts. Cleft Friends is not our full time jobs - but it is who we are!
Ideally, we would like to travel to the Cleft Lip and Palate Association (CLAPA) in London to do their parent training programme so that we can be in a position to train parents in South Africa in other districts to establish similar support groups. We are in the process of raising funds for this venture.
For more info, please check out our website http://www.cleftfriends.co.za/
We also have a facebook group which we invite you to join or visit for regular updates on what we are up to. http://www.facebook.com/1/5b24e
Helena & Matthew Cullis
Port Elizabeth, South Africa
10 March 2010
No comments:
Post a Comment