<3 Allaura Lilly-ann's Journey <3
My name is Nicole, I am a mother of 4 very active boys and wife to Gus Mac.
We found out at the beginning of the year we were going to have another baby.
Shocked at first of course but then after the shock we were over the moon :).
We had a rocky start at around 12 weeks and I experienced a threatened miscarriage and we thought we had lost our bub. However after a scan and a blood test we were told the baby was still alive and doing fine.
At around 19 weeks we had another scan to check and see if everything was ok.
The first thing we found out was that our baby was a GIRL, we were very excited to hear that but towards the end of the scan the sonographer found some abnormalities with the size of her head.
The sonographer said the head was measuring at 17 weeks when the rest of the body was measuring at 19 weeks and we were informed that we were to go and see the Drs for the report ASAP.
After hearing of the report, the anti natal Dr's. had advised us that we need to go for another specialist scan to look closer at little peanut's head.
At 20 weeks, just a week later we had another scan to look closer at what could be the problem only to find out that she was missing a portion of her frontal brain which explained her head being a lot smaller than normal, it was also noted that our baby girl had a cleft lip and palate :(.
This was later on explained to us at the hearing of the report as being called Microcephaly & Holocephaly and we were to have more scans and a CVS (Amniotic fluid test) to see if there were any chromosomal issues causing this problem.
The tests came back negative for any chromosomal issues so their guess is this has just been a random issue that has occured early on in the pregnancy or could be genetic factors but we are yet to have any genetic tests done.
We were then sent to Hobart with very little notice to have another thorough exam of her brain and her clefts.
Due to it being so little notice we had to take our 3 young boys with us and stayed 3 nights at the John Opie House which was extremely stressful :/ . This was done so we could get to both the appointments, one of which was a 2 hour scan on the Monday.
We arrived at the specialists appointment on the Wednesday to hear of the report.
We were both told baby Allaura's condition is diagnosed as CP (Cerebral Palsy) with the cleft lip and palate which means she would not be able to breastfeed or possibly bottle feed so will have to be tube fed and surgery at some point after Allaura is born :(.
The specialists do not know the extent of her issues and can only guess as to what she may or may not be able to do.
The portion of the brain that baby Allaura is missing controls hormones to the body, movement, speech, and memory.
The worst case scenario was explained to us in this manner "your baby may not be compatible with life" then advised us that there was also a 15 to 20% chance of being able to function on her own. :(.
Our baby is a fighter and so are we and we hold hope and feel how strong she is becoming everyday we feel her kicking in my belly, we will not give up on our baby girl Allaura. <3
We will however not know the full extent of her condition until she is born and starts to grow and develop.
We have an MRI scan booked in Hobart for October and once again have to stay in Hobart for another few days and we are hoping this will give us some more information on what to expect once she is born and be able to prepare ourselves for events to come, whatever they may be. We will update our information as it becomes available to the family.
The reason that I have started a GO fund me is because we believe she deserves a chance at life and for us to be able to love and cherish her just the same we would if she didn't have these issues. Allaura has fought hard to stay with us and we will not give up on her.
In order to give her to best care possible we will need some help.
We do not easily go seeking assistance and help from others, however this time we have realised we have no other options available to us.
Any support and donations will help with travel costs to and from Hobart (Possibly Melbourne), specialist feeding equipment and any other specialist equipment that we may need for Allaura and hopefully a more reliable transport as the vehicle we have now is on it's last legs and no longer a reliable source of transportation to get us to and from specialists appointments and hospitals.
We truly do appreciate all the support that our family have received so far and we thank you all from the bottom of our hearts and we know how much Allaura is loved by you all too.
We will be forever grateful for your help and support <3
Love Nicole, Gus and the boys <3
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