Real life: Meet Hadassah
One little girl born with craniosynostasis
Our daughter was born on 24 November 2013 at 4:55am on a Sunday morning. I had had a healthy pregnancy, apart from being uncomfortable for most of it, and I hadn’t been able to do as much as I had when pregnant with her brother. But that said there were no medical issues and we were able to have a home birth with her at our East London home, which was a lovely experience.
Hadassah was a chubby, pink, beautiful baby but both my husband, Duncan, and I were concerned about her head shape. We wrote it off as a weird shape from the birth process and hoped it would sort itself out.
Hadassah was a brilliant sleeper and lazy eater at first, so much so that I started to lose my milk due to her irregular eating habits. I tried all the tricks to wake her, stripping her naked, rubbing ice on her feet – and she just slept. She was alert when awake, so we were rather puzzled, and we took her to our GP to make sure there wasn’t something seriously wrong. He checked her over and didn’t seem to find anything concerning, except for commenting on her head shape. I told him I had her six-week check-up with the paediatrician the following month and said I would bring it up with him. Now our initial concerns were made more real. Fast forward a few weeks to 10 January 2014, and our trip to the paediatrician. He took one look at her head and examined it by feeling the sutures (the cracks in the skull). This was where we learned a new word, craniosynostosis.
Newborn babies are born with gaps or “cracks” in the bones of their skull. The skull bones remain unfused for few years, allowing the skull and brain room to grow. But if the skull is already fused at birth, it causes the head to grow abnormally, and can result in pressure on the brain, which can cause brain damage. So it is very important to assess if there is pressure and alleviate the pressure as soon as possible.
We were sent for a CT scan the following week to see the extent of Hadassah’s condition. The CT results confirmed the paediatrician’s diagnosis and we were then referred to a neurosurgeon. Hadassah had a fusion of the sagittal suture, a term called scaphocephaly, Greek for “boat head”. The neurosurgeon assured us that there was no intercranial pressure, but advised us to consider surgery to rectify our daughter’s head. He recommended that we see a team of doctors in Cape Town at Tygerberg Hospital. We would need to take her for an initial evaluation where they would assess the extent of her condition and then decide on a course of action.
In February we travelled to Cape Town for our baby girl to be assessed by an array of specialists. This was quite an experience! Tygerberg Hospital is a state hospital, and we arrived at the hospital at 7am and joined the queue to open a folder for our child. By 12pm we were finally called through by Dr Geldenhuys, and my
and felt out of my depth. Only one parent was allowed to stay at the hospital with Hadassah. I found this very hard, especially when all the other moms in the ward seemed to have everything so together. Fortunately we had an incredible support group – we could almost feel the prayers of our friends and family.
The morning came, and our girl was first on the theatre list. I gave her the pre-med and kissed my baby goodbye. We had decided before that Duncan would go through with her to theatre. I walked with them to the doors. Once she was wheeled through the doors a weight lifted off my shoulders. The time went quickly and soon we were back in the ward waiting for Hadassah.
The operation went quicker than expected, and went well. We were directed to intensive care to see our baby. The nurses in the intensive care were incredible, they were so caring towards us and towards their patients.
The following day Hadassah was released from ICU, and only given Panado as a painkiller. That evening the swelling on her head started, which we were warned about. Her eyes were swollen shut, for about two days, which made her grumpy, but as soon as the swelling went down her mood improved. She struggled to keep her milk down so we resorted to tiny feeds more often. This seemed to work quite well.
We were kept in hospital until the Monday, but had to come back on the Wednesday for a small check-up and then had to scramble to find transport back to East London. We were also told to come back in November, on her birthday, to have the plates removed. This went off without a hitch.
We don’t think we could have made it through this tough time as well as we did if it weren’t for our church, family, friends, doctors and strangers who helped us out the way they did.
We have since meet another two children with the same condition, one living in East London and another in Cape Town when we went for her first annual check-up a few weeks ago.
We are telling our story to raise awareness for the condition and to let parents know that there is amazing support out there when going through something like this. Although I would never have wanted this to happen to our daughter, our family is much stronger having gone through this experience. YB
Hadassah’s skull sutures were fused
Adoring her big brother, Hadassah
is doing well