Last year my husband and I found out we were pregnant, we were ecstatic and started preparing for our new little bundle. At our 12 week scan a high NT was picked up and we were told our baby would possibly have Down syndrome so we opted for a CVS genetic test to confirm or rule this out, one of the hardest weeks ever was waiting for the news. At the end of the week we were informed all is clear and we were over the moon. At our 21 week anatomy scan the specialist picked up possible hand issues and we were told he may have structural issues here but that we would only know the exact issue once he was born.
On 22 January 2018, at 37 weeks I had an emergency C-section and Chad was born. It was soon realised he had a very rare condition involving craniosynostosis called “Apert Syndrome” and he was rushed to the NICU. His fingers and toes are fused, as well as an early skull fusion, small nasal passages, wider set eyes, and a shallow eye socket, two holes in the heart and this left us devastated. We have no family history on either side to suggest this as a possibility and soon were informed it is a spontaneous genetic error that can just occur- the news was nothing less of traumatic.
Chad spent 40 days in the NICU with feeding tubes and oxygen; eventually he was allowed to come home and showed such strength getting over each hurdle. We now face the overwhelming task of offering our son the best chance to have a normal life. He will need leg casts and special shoes to straighten his feet, and face multiple surgeries to correct his skull and hands over the first 2 years of life. He will then need intense therapy to assist with his recovery over the years from occupational therapy to speech therapy. Chad also has placement eye issues due to the skull fusions and will need constant ophthalmology assessments to assist with this.
The best news so far is the two holes in the heart have almost completely closed on their own and only monitoring is needed currently with no further intervention needed at this stage. Our little miracle boy is reaching milestones so far, and the big smiles just melt your heart, as parents we know we have to give him all we can and deal with the immense heartache it brings with it.
I feel so extremely blessed with our family and friends support thus far and we are not ones to ask for assistance, but have come to realise this is a task greater than what we can handle alone. The medical bills have already started to overwhelm us even with medical aid and gap cover, that will only go so far. Any prayers and donations which can be spared will help baby Chad immensely with the long road he is facing ahead and would be such an enormous help for us.