Daisy's story

We found out we were pregnant with Daisy in January 2020 at just 5 weeks gestation. We were extremely anxious to say the least but after extensive genetic testing following the loss of Rose we were told that no genetic cause could be found. What had happened with Rose was likely to be a spontaneous event and there was no reason why we couldn't have children so we tried to keep that in our mind.

All was fine out our 12 week scan and at this point partners where still allowed to come in so we were both there during the scan. Things had changed by the time the 20 week scan arrived. The COVID-19 pandemic hit and restrictions were now in place at the hospital meaning that Jamie had to wait outside. The scan was going great until Daisy was sat in an awkward position so the sonographer couldn't complete all the checks at the end of the scan and told Hannah that Daisy was measuring really small and that at the next scan in two weeks they would check the blood flow from the placenta as well.

Fast forward two weeks and again all was going ok until the sonographer said 'I’m just going to get my colleague, I need them to check as it appears that Daisy's heart is taking up most of her chest cavity', the second sonographer came in and confirmed this. At this point we thought that it was happening all over again and just couldn't believe it. We were referred to fetal medicine for a more detailed scan.

Our first fetal medicine scan was in May 2020 and we didn't know what we would find out and whether Daisy was going to be ok, but were both expecting the worst after everything that had happened with Rose. With this in mind we were both extremely shocked when we were told that Daisy was going to be ok and that her heart and chest were ok, we couldn't believe it. At this point we finally allowed ourselves to get excited. We were due to go back to fetal medicine 4 weeks later as Daisy was still measuring small so they wanted to keep an eye on her.

When we went back for our next scan and we were told that her chest was still extremely small but so was she so it was in proportion to her size, however, something else was found something that is referred to as a 'double bubble' meaning Daisy would need an operation when she was born so she could eat. It was decided that Hannah was to have scans every 2 weeks at fetal medicine.

We went into hospital at 37+4 to be induced all was going ok and Hannah was contracting well, however, by midnight it was discovered that Daisy had turned and was in fact breech, so Hannah needed to have an emergency c-section. We were told that they would still do delayed cord-clamping if Daisy cried when she was born. Daisy was born at 2:17am on 31/08/2020. We heard such a cute little cry and just looked at each and thought 'she is here and ok' for that split second we were so happy, but the atmosphere changed. The NICU doctors where called and the neonatologist on call was called, The doctors and nurses spent an hour trying to stabilise Daisy to get her to NICU, they eventually managed and she was wheeled off, at this point we were told that she was really poorly and our worst fears looked to be happening all over again.

When we were leaving theatre one of NICU doctors came and got Jamie saying 'Dad we need you'. Daisy's heart rate had dropped and she was not able to breath, the doctors hadn't even managed got her into a bay in the unit. Jamie then had to make the heart-breaking decision to bring Daisy back round to Mom. As soon as Jamie walked in he shook his head. The Doctors put Daisy in Hannah's Arms and she passed away at 4am 31/08/2020.

Alveolar Capillary Dysplasia (ACD)

In January 2021, after multiple professionals around the world had been consulted, we were told that both Rose and Daisy had Alveolar Capillary Dysplasia (ACD), an extremely rare illness with only a handful of known families in the UK affected, and an estimated 200 worldwide. The illness prevents oxygen from getting through the lungs into the blood and then around their body. They both have now been entered into a study in Texas to help find out more about ACD.