Get Cassidy to America

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Cassidy's story: Chris & I found out July 2014 we were expecting another baby. It was still only early days but I was ecstatic.

6 weeks into our pregnancy I was getting really bad pains so was referred to hospital for a scan as the Dr believed I was having an ectopic pregnancy. The scan revealed that all was well & we were having Twins, we were shocked but delighted & shared our news with everyone.

We went for our 12 week scan which showed one of our babies growing well but sadly showed one of our twins heart had stopped beating, we were devastated. Unbeknown to us this was only the beginning of our heartache.
By our 17 week scan our little Twin was gone. Our other little one was growing well in the little sac & it was confirmed that it was a Girl, our little poppet we named Cassidy.

We continually got monitored the rest of our pregnancy, scans every couple of weeks & seeing a Twin consultant. We started getting growth scans & were told Cassidy is going to be a small baby but the consultant said not to worry as this would have been the norm for her with being a twin & also believed that I just carried my girls small as our oldest Daughter was 6lb13 when born which was a big difference to our son who was 8lb1.
We had a routine scan at 35 weeks to check Cassidy's growth & also check if she still remained breech, the midwife sat for ages doing measurements & staring at the monitor. The look on her face said it all, she said your baby's limbs aren't measuring up. She explained that Cassidy was sitting in a akward position but she would have to refer us to get this double checked.
The following morning we went to see a consultant who confirmed that Cassidy's limbs didn't measure up, her humerus bones were measuring at 18 weeks & her femur bones were measuring up at 27 weeks, we couldn't believe what we were being told as this was our 9th scan. How can this be? How is this only being noticed? Was all the questions racing through our minds.
We were referred to a bone specialist team who confirmed everything & explained to us that they believed Cassidy had a form of dwarfism. They took bloods from me to be sent to Great Ormond Street Hospital to test Cassidy's DNA for 2 forms of dwarfism, these tests came back negative. The team explained to us they were concerned by the size of Cassidy's chest & with the measurements they were getting on the scans they didn't think her ribs or lungs had developed properly & as a result believed that they didn't think Cassidy would survive birth. We were heartbroken. How can this be, this far on in our pregnancy? How do we tell everyone? How do we explain this to our children? We struggled badly with this news but the fact that Cassidy was still growing & moving kept us positive, she wasn't giving up so we couldn't either.
We were booked in for an elective section as Cassidy was still in breech position. We set everything up at home for our littlest princess's arrival, we weren't giving up on her or accepting the fact that we were not bringing her home.

On 25th March 2015 we headed into the hospital for the hardest day of our lives. We were preped for surgery & all the teams of specialists & paediatricians had everything ready for the arrival of our baby girl. It was explained to us before going into the section suite that they believed there to be 2 scenarios of Cassidy's birth, 1 she wouldn't make it out of the labour room or 2 she would need full ventilation. This was all just to much, how can anyone prepare themselves for this. We were broken.
Lying there on that bed holding my husbands hand, both of us with tears in our eyes looking at what seemed like thousands of faces patiently waiting to get our baby girl out. All we wanted was to hear her little cry, see her beautiful little face just to know that she was alright. The surgeon said your baby is almost here, then we heard this tiny little chocked up cry & we crumbled. It felt like hours were passing, all I remember was loads of noise & mumbling. Then a Dr saying your baby girl is doing well Daddy to you want to come over & see her. Chris went over & managed to get through the teams of people to catch a quick glimpse & take a little pic of our tiniest little miracle.
Cassidy Catherine McCrone was born at 11.14am & weighed 6lb 6oz. she was taken away straight away so they could do scans, xrays & bloods, we were taken back to the recovery room to wait until we could get to meet our baby girl. The hours dragged by & it was 4.30pm before we were took to NICU to see our littlest princess. She was perfect, breathing on her own & all she required was a little amount of oxygen. Looking at that beautiful little face lying there so content, just melted our hearts.
Cassidy spent 8 weeks in Yorkhill sick children's hospital. It was confirmed at 4 weeks that Cassidy had RCDP. Her kidneys weren't working right & she required suppliments of all her body salts. Reno Dr's thought she had a condition called Barters syndrome but after 2 weeks her electrolytes corrected themselves so they think Cassidy's kidneys just hadn't developed properly & were now fine. Cassidy was born with Cataracts (linked with Rcdp) & had surgery at 6 weeks old to remove them from both eyes & she now wears contact lenses. Cassidy has mild to moderate hearing loss in both ears & is due to get hearing aids on 19.08.15 Cassidy got discharged from yorkhill when she was 8 weeks old & she attends a few days a week for outpatient appointments. She now weighs 8lb 14oz, is currently doing well & we just enjoy everyday together with our little family 19.08.15 It was confirmed that Cassidy has RCDP type 1 Thank you for reading cassidy's story Love from Natalie & Chris xXx We would love for Cassidy to go to America for the Clinical Trial & treatment .X.