Donations for UCLH fetal medicine unit

Hello,

We are asking for donations to support the Fetal Medicine unit at University College London Hospital.

Violet would not be here today if the team at UCLH had not intervened and given her life saving procedures. Their knowledge, skills, dedication, technology & quick thinking saved Violet's life, we will forever be in their debt as her parents, but we would like to give back what we can.

Our story began in March 2024, when we discovered we were expecting a baby, we were over the moon. Our 12 week scan showed a healthy bouncy baby! We told our 2 older children, and announced our happy news. On 22nd June 2024, at our 20 week scan our world crumbled. We were told our baby had fluid around their head, under their skin, surrounding their heart, in their tummy cavity and in my placenta. We were told "we're very sorry, this isn't good news at all". After inevitably googling all of this when we arrived home, we knew what we were being faced with was truly awful. A few days later we were seen by a fetal medicine consultant at our local hospital who confirmed our suspicions that our baby had Hydrops Fetalis. The cause for hydrops varies, it can be due to chromosomal abnormalities, genetic conditions, or an active infection. Infection is the least likely reason, but the most treatable for obvious reasons. Our baby was also critically aneamic and in active heart failure - a strong indicator that this was in fact infection. We were urgently referred to UCLH in London for a fetal blood transfusion. When I asked when the transfusion needed to happen, the consultant said "last week". My heart sank and I thought we were already too late. We decided to find out who our baby was, and to our delight - a little girl.

24 hours later after meeting the team at UCLH I was walking into theatre to give my baby a blood transfusion at 20 weeks. I was terrified, Taylor said to me during the procedure "let's make a promise that if we bring her home, on her 1st birthday we will take her out for ice cream" and we held onto that.

Violets red blood cells were so low that her blood was yellow. We had a 25% chance of her dying during the procedure but we knew that would happen if we did nothing! She was sedated, the blood was administered and it was successful. We'd done all we can. At our next check there was no change, at all. It was crushing. They advised we needed to do the transfusion again, which took a lot of strength to do and the risks were greater. So, we did it again at 21 weeks and it was successful again, and now all we could do was wait. In the meantime our amniocentesis results confirmed the cause of hydrops was Parvovirus (slapped cheek syndrome) and all chromosomal & genetic testing came back clear. Our baby was perfect, but poorly. We had to wait 2 weeks and it was probably the worst 2 weeks of my life. She kept me going wriggling in my tummy. Our next scan showed the transfusion had worked, and her anemia was clearing up, showing she was starting to beat the virus! Our little baby girl was so strong. The hyrops however were still there and were preventing her organs and bones from growing and developing. They needed to go. It took months of scans and trips to London to see a decrease in her hydrops but eventually they started to absorb very slowly, and eventually they were gone. Our last hurdle was an MRI of her brain to see if the aneamia, long lasting hydrops or the intervention whilst in the womb had done any long lasting damage, which would show as a brain bleed. This was all consuming for us, and torture wating for her to be big enough for the scan. The scan came and the next day they called me with the results, our little warrior came through again and at 32 weeks & 2 days pregnant we finally got at all clear and were discharged from UCLH. I phoned Taylor at work and said "she's okay, her brain is okay" then we both didn't speak and just cried on the phone. The relief was unbelievable, the world had been lifted from our shoulders.

It was euphoric, we will never forget that day.

On 5th November 2024, we welcomed Violet. A 6lb 13oz bundle of absolute perfection. She really is a miracle and we thank our lucky stars that she's really here. Emotionally it's been challenging, meeting her and knowing what battles she has overcome. She's just the best little thing in this world and we are so lucky. We are in support groups for Hydrop parents and we can tell you that we are one of the lucky ones. Most stories like ours do not end in the same way. Our hearts will always be with those parents.

We will never stop spreading awareness about the dangers of slapped cheek in pregnant women, no matter how ultra rare it is, as we are living proof it happens. We will always be advocating for change, and we will continue to tell our daughters remarkable story.

Not only did the team at UCLH save our baby, they were an amazing support to Taylor and myself. The care we received was exceptional, the emotional support was constant and we felt like part of a family. They were so invested in Violet's journey, it felt personal and we weren't just numbers on a page.

We have many plans for the years to come and probably for the rest of our lives for how we can raise money for this incredible unit. and we are asking for people to help and get involved if you possibly can. Big or small, every penny would be amazing and we cannot thank you enough in advance.

All we can wonder now is what flavour ice cream she will choose?

Thank you for reading.

Charlotte, Taylor & Baby Violet

xxx