A Not So Different Life

An email we sent out to friends family etc
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We have now been given an assessment of what the life of our baby will be like and it’s a long way from what we originally thought.

I want to say things are fine and even great, but of course I would be only be comparing to the original diagnosis on that Wednesday night, secure in our minds as the worst night either of us has experienced. But for us right now things are great. The spina bifda is still there but the hydrocephalus is being kept at bay. The baby was kicking and somersaulting much to the scanners annoyance.

The Spina bifda, for those who care about such things is located at L5-S1 whatever that is. For most of us this means the lower part of the back where the hips meet the spine. This point and below is where the nerves for the feet and bladder hook up so these are the areas which will be effected, the severity we have no idea. This means there is a chance that our baby will not walk but will have full motion from the knees up which is fantastic.

The plan is for the baby to be born at the Leicester infirmary. There are no plans for a c-section and it probably won’t be necessary (turns out we are not too posh after all!) and then after about 24hrs be moved to the specialist neurological ward in Nottingham. A technicality we are warned of is that mother and baby will have to travel by separate ambulance as 2 patients are not allowed in the same ambulance. Maybe one of our medical friends could answer that one? They will then operate on the baby at the base of the spine to replace the nerves and make things secure from infection.

There is a possibility for the hydrocephalus to return but we are told that the longer this is delayed the better and once the baby is born they are able to do various things to relieve the pressure. Please continue to make this the top prayer priority.

Then, all going well we will be home with a healthy baby girl. We have been told she can be treated as any other baby, breast fed, bathing swimming, crying at 3am for 6 hours etc. We will deal with any problems if and when they arise.

We still have the genetic scan to come but no evidence of a genetic problem has been seen so we are hopeful. As for the health of any possible future children the risks have gone up but only by a couple of percent so no undue worry there which is a relief.

Just another note about how great the care we have been getting is. The doctor’s and everyone else involved have been really great. We even sailed into a perfect parking spot at the hospital. Yes, prayer for good parking works too!!

Thank you so much to everyone who has called & written. We have so many great friends. We continue to believe that through this baby God will make himself known to people in many different ways. God did not create this illness but through it He will change the lives of us, our baby girl and those around us for the better.

Take care and Speak to you all soon. Please forward to anyone who would be interested.

Nic and Kathy
http://nicandkathy.blogspot.com

“We also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us” Romans 5