Abigail Elizabeth Degenaar arrived on June 24, 2004! She was born with a rare genetic disease called Osteogenesis Imperfecta, more commonly called Brittle Bone Disease. Osteogenesis Imperfecta is characterized by bones that break easily, often from little or no apparent cause. Abigail's family would like to use this site to share with others their experiences of having a baby with Osteogenesis Imperfecta (OI).
Soon after Abigail was born we searched the Internet trying to find information and help. There was quite a bit of general OI information, but little on what life would be like with a newborn living with the disease. We hope this will give you an insight as to the CHALLENGE, JOY and HOPE there is in raising a baby with OI.
On this site we will share some of our favorite photos of Abigail, update her progress month by month in different areas and share information that we have found helpful. It is for parents and family members of other OI babies and for anyone who would like to learn a little bit about this disease.
The care of Abigail at first was almost over-whelming! But, with the love of family and special friends and their prayers those difficult times were made a little bit easier. With each day we adjusted, we learned and things got better for her and us! We would like to share information that has helped us and what Abigail has taught us!
PLEASE JOIN US - If you are the parent of a child with OI, we have started an OI Parents Email Discussion List. We have members who share information on a daily basis with each other. If you would like to join, e-mail us at email@example.com and let us know.
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Abigail Elizabeth Degenaar was born June 24, 2004 in Pietermaritzburg, Kwazulu Natal South Africa. She weighed 4. lbs. 8 oz. and was 16 inches long. She was born with 27 fractures.
My pregnancy had progressed quite normally. This was my husband's first baby. He was so excited and was convinced it was a girl. At sixteen weeks they picked up a problem in my blood tests and requested me to have an Ultra Sound and an amniocentesis. This was quite a shock to us and we went through quiet a rough patch in not knowing what would happen. After four weeks of waiting the tests came back negative and we were told to carry on with the pregnancy as normal. We were also told that it was a girl and we named her Abigail. I suffered throughout my pregnancy with morning sickness and only by the eighth month did it settle down. Abigail was breech and on my 38th week I went into labor. The doctor decided to do a caesarian section. When Abigail was born her legs were up against her waist and this was put down due to the breech position but were concerned with the shape of the bone and it was only after 5 hours of waiting and tests that we found out about Osteogenesis Imperfecta. We were absolutely shocked and we spent the next few days coming to terms with the whole illness. Without the support and prayer from our family and fellowship we feel that we could not have coped with this ordeal.
An x-ray of her entire body revealed twenty seven fractures of which their were sixteen in her legs which caused the bowing effect. Some of the fractures were in a state of healing (callousing).
Our pediatrician had never had a case such as this, and we were referred to an Orthopedic Surgeon who had, had several patients with OI but had never treated a baby. They put us in touch with a mother and daughter with OI in our city and asked them to visit us. This was quiet an eye opening experience and they were extremely supportive, bringing us photos and articles for us to read. After going home and trying to deal with how to care for a baby with Osteogenisis Imperfecta we started to search on the internet and found as much information as we could on how to bath and change nappies and clothes. Most of the time we learnt by touch and feel. Every time I read more and more information I tried to contact somebody in our immediate vicinity to find out if they could help us. I got in touch with a Physiotherapist and discussed Abigail's care with her she referred me to an Orthopedic Pediatric Surgeon. We had read about pamidronate on the internet and had tried to find somebody who knew about it. On meeting with this new Orthopedic Pediatric Surgeon he informed us that he had done rather a lot of research on "Brittle Bone" and knew of a pediatrician who would be happy to meet with us. This is how we came to meet with our current pediatrician. We started Abigail at five months on the treatment which is administered intravenously. Abby now recieves Zolidronate Aclasta bi-annually intravenously over 1 hour she has finnaly reached the weight and age to tolerate a stronger dose.
Abigail has only had two fractures since birth one being when I was changing her vest and she fractured her right arm and recently she fractured her left leg. The second instant she was in Gallo traction for three weeks. We treat her with soft careful movements and do not allow anybody to handle her except her close family and her caregiver. Many more fractures have happen since birth but with each one comes a new experience and could estimate she has had approximatley 50 fractures all together, what a brave little soul.
While learning that Abigail had Osteogenesis Imperfecta was quite a shock to us at her birth, we just loved her more than we ever imagined. She was our sweet little baby and we were her parents! We knew that there was no trial that she would face that the Lord and a loving family couldn't help her get through. We were blessed to be in touch with so many wonderful people who helped us. Those first few months were such an adjustment, a time of learning and patience. We had our fare share of tears, but more than our fare share of smiles too!