SO many people have said over the last few weeks that fighting for basic care for your sick child is a fight you shouldn’t have to do. But the more we walk this path the more we realise how little the medical sector know and will do for Trisomy 18 babies.
Their research is often outdated, their experience with it minimal.
Take for example the specialist we saw today, in 20 yrs hes only come across about 5 babies with Trisomy 18..FIVE..How can the right decisions be made when you know so little? How can you know how each child will respond if your not giving the opportunity to try? If parents don’t follow their intuition or the inspiration they feel from above, who will change the situation and how will we ever know the capabilities of a baby with T18?
The fight for changes has to start somewhere and whilst technically it isn’t really fair that we as parents have to fight for care who will if we didn’t? I am grateful for other parents that have guided me and Soft uk that have up to date research! We have been blessed to have this special little lady come to our family and therefore it is our responsibility to give her the best life we can however long it is meant to be.
Today was our 3rd meeting with a neonatal specialist today at the LGI. The first in my opinion was a complete disaster, simply a list of what we expected, shot out of the water with “thats not normal procedure in these circumstances” we seriously were shocked that they didn’t seem to want to help our baby just because she has a “lethal” diagnosis – pffffttttttt!
The second we believed was better but then came to realise after bumping into the DR this week that nothing we said was added to the plan and “comfort care” again appeared on the report we received through the post! I cannot describe to you the frustration this causes, you just think theres hope, or rather you know deep down things could go ok if they’d just listen and change their ‘usual protocol’ and give your child a chance. I was grateful they suggested another meeting and I went fired up with my research and examples to fight Poppy’s corner! Nath laughed as I produced a word processed document with a nicely stapled corner containing case studies of babies with similar complications and more upto date research – We feel they’ve finally heard. Our persistence has paid off!! They even gave us a tour of the neonatal unit and said “this is where your baby will come after delivery” (well thats promising!) during this time we were told by the nice neonatal specialist:
“provided your baby is born alive, which I see no reason why she wouldn’t as she’s still strong at this stage, we will insert an NG tube and feed her with expressed breast milk. We will arrange within a couple of hrs after birth for cardiac scanning and an xray to determine the severity of her health conditions and decisions with you will be made based upon those findings. If she needs a period of intensive treatment that will be offered or she may just need a few days on special care. Provided she continues to live we will discharge you all with the feeding tube”
AT LAST!!!!! SOME ACTION!!!! I feel very blessed that we have this in place. We don’t know how much we will use, we still don’t know for certain that she will be born alive. We know she has a short life but what we wanted and what they are finally agreeing to giving, is assistance to help her live, help her fight if she wants to and if she is meant to. I can now go into labour with the assurance that its in the hands of the Lord and we and the medical staff are a team to support her life as long as she needs it. How great! I guess we don’t know how much persistence and fight is with in us until we are pushed to the edge and have to decide.