Weʼve raised £125 to CAN congenital anemia network A charity that offers support and help to those who have inherited a rare blood condition like HS
- Oxford, UK
- Funded on Wednesday, 15th August 2018
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Our beautiful baby Molly Maeva was born at 8:20am on the 1st June 2017, after a not so pleasant very quick 20 minute delivery via emergency section, she was beautiful perfect and absolutely everything we could of asked for and more to complete our family. Molly came with me on to the ward and everything seemed as it should with no reason to think different. At around 3:30am (approx 14 hrs old) I took Molly to the midwife station on the ward to ask for her bottle and mentioned to the midwife Molly looked off colour. She was orange with yellow whites of the eyes and I couldn't explain it any better then saying she looked like she had been to the Bahamas.
The midwife sent someone down from scbu to take some bloods to test from Molly and within ten minutes my heart sank.. they had rushed her straight off and insisted I stayed and slept, I refused and had to be by her side.. what was to happen next none of us could have prepared ourselves for and with out a doubt was the hardest 6 months for us all. Molly had to have several anti biotic drips, a transfusion and be put under 3 large UV lights and led on a UV mat, her blood gasses checked regularly, her haemoglobin kept dropping and her jaundice levels raised about 650.. we had no idea what to do or what we would be faced with.
After some time the lights slowly got reduced but her levels kept jumping up and down, we were then told that the reason for this could have been down to conflicting bloods, my self and Molly having different blood groups, when we were able to take Molly home but the worry didn't stop there, we left scbu at 8:30pm by the time they had sorted meds and had to be back in to the childrens ward by 10am the following morning for mollys bloods to be taken and a full blood count to be done.. after a wait and the results back we were asked to go and have a meeting with mollys paediatric consultant, when we got there we were told that there where spherocytes detected in mollys blood, (Mis shaped blood cells) and that she also showed high levels of anemia, they were unsure on whether Molly had an underlying issue (hereditary spherocytosis) or whether it was down to conflicting bloods at birth, because of how fast Molly went down hill at birth and her jaundice developing so fast (within the first 24 hours of life) we were told there's a chance it was HS. I had never heard of this have no family history of the rare blood disorder and I felt so lost and confused, I blamed my self for a while and wondered had I done something wrong during pregnancy etc, as soon as we could we began doing our research and soon came to realise how rare this condition was, I had to take Molly to the doctor to get more folic acid and when I got there I found I was telling the doctors about the condition as they have never come across a case, we hadn't been told much about it nor did we know how to handle it or what life would throw at us as Molly grows. We were told that we would be passed over to the haematology team after 6 months (this caused more worry and more reason to believe it was HS) After a bumpy road and a very long wait with lots of weekly hospital visits doctors appointments and constant prescriptions to collect, we had a final full blood count at 6 months of age, it look nearly 2 weeks to get the results but when we did we were told that the spherocytes had gone down her haemoglobin had gone up and that they wouldn't need to see us again.
We where relived and shocked!
We want to raise more awareness of HS what it is and how it affect people! Myself and Molly are going to take part in a 5 mile sponsored run/walk to raise money for CAN a small Local charity in oxford that help those who have inherited a blood condition like Hereditary spherocytosis
Updates appear here
Rebecca Horler started crowdfunding
Leave a message of support
Aug 2, 2018
Good luck hunny
Jun 27, 2018
Jun 13, 2018
Hope you manage to reach your target! Very worthy cause! Love to you all ❤️
Jun 12, 2018
Good luck Molly and Rebecca xxx
Apr 19, 2018
So very similar to my son's birth story. I wish more people were aware to help with that shock. Good luck in your fundraising!
Apr 17, 2018
Definitely worth raising awareness about. Molly is such a sweet child
Apr 17, 2018
For Molly Moo 💜
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