My daughter Mya was diagnosed with Osteogenesis Imperfecta (OI) in utero. She is now 23 weeks old and diagnosed as a type IV.
At our 20 week scan, the sonographer went deathly silent and looked flustered, before telling us that she needed a second opinion and then leaving the room.
We sat and looked at each other bewildered and anxious, our previous excitement and joy dwindling.
She returned and explained that she wanted us to see the consultant but could not get us booked in for 6 days. I asked her what was wrong and she told me that the legs were measuring differently and that it could be a dwarfism or one of a number of skeletal dysplasias, then we were sent home. No further explanation. No follow up support.
6 days…. 6 DAYS!
This was simply the start.
We had many scans and appointments with Fetal medicine after this day. I didn’t see my midwife again and only saw doctors and specialists.
We were told different things from different professionals. Some believed Mya had OI, others believed it was a different skeletal dysplasia. Severity was always discussed. Long term prognosis was never ascertained. No professional wants to tie themselves to a clinical prognosis in case of repercussions, it is understandable. Yet nobody understands how it is for the parents.
The burning questions. The constant need for reassurance. That impossible conundrum.
It is a process for the professionals. It is a personal and unforgettable experience for the parent.
It changes everything. It changes you.
Recognition is so significant at this time. The recognition of what the parents are going through, and the emotional impact.
I can not fault my physical care, but I didn’t have any offer of emotional or psychological support from services. This concerns me, and I believe this is a huge gap which needs to be filled.
We were lucky as we had each other.
We had the OI community and our family and friends.
Not everybody has this, yet this is huge.
Diagnosis is huge, uncertainty is huge.
Mya was born via Caesarean section on 13th May at 37 weeks. She arrived in the world screaming and healthy. She had a full skeletal assessment and was officially diagnosed as a type IV. Mya was referred to the metabolic bone team at a specialist hospital and began biphosphonate treatment a few weeks later.
She is born different but this will simply make her stronger and more resilient.
There is a highlighted need to raise awareness and educate people in what it is and what it is not. I honestly believe that to change the world, first we need to change each other.
I began a page to show Mya’s journey and to also include significant content to provide awareness and knowledge of OI. I believe that the more this is spread, the better known this condition can become. This can reduce social exclusion, stigma, perceived limitations, negative ideations, and promote hope.
I would be so grateful if you could share Mya’s story on your page to help spread this further.
My page is:
Osteogenesis imperfecta- Cushioned in Love