My daughter and our little family

Mila-Boo's Story...

hi my name is hannah and this is our life.myself and my partner was trying for a baby when we was told it was highly unlike we could get pregnant without IVF. We was due for our first round of IVF in January 2022. However in September of 2021 I found out I was pregant whilst isolating with covid. We couldn't believe what we was seeing, I took a pregnancy test every day till our 12 week scan just to be sure I was. We had our 12 week scan and an early 15 week gender scan to find out... WE WAS HAVING A GIRL! After our family giving birth to 9 nephews between them we finally had a baby girl in the family again we couldn't believe it.

It soon took a turn as at our 20 week scan it was discovered that our miracle baby girl had something wrong with her heart so we was sent straight to a specialist when after many many scans and being transferred to Liverpool womans hospital we was finally told the condition out precious girl had which was Hypoplastic heart syndrome along with alot of other condition. In words that we could understand this ment that she only had half of a heart formed, the 2 main arteries to the heart was the opposite way round she has no structures inside her heart and the heart itself was flooding on the inside. Our world collapsed around us and I just wanted to be swallowed whole as the cardiac consultant informed us it was a 10 out of 10 case and offered us a pregnancy termination. I blamed myself for a long time for not growing her properly even though it was something out of my control.

we decided to keep her as we felt she deserves a chance to show how strong she can be, after all she was already our miracle baby.

we was having scans every 2 week and updates on what would happen, we was referred to a charity call derian house who was amazing!

we all sat down and they told us what would happen, I would give birth naturally but she would be taken from us ASAP to get her stable which was so hard for us to do because all you want to do is hold them. Once she was stable she was taken to alder hey childrens hospital where she was put to sleep and a IV line was placed into her neck and we was able to see her, however I was still at Liverpool womans after contracting an infection they said was sepsis but in them few days I developed postnatal depression and was terrified of seeing her.

when I finally saw her I knew I needed to look after her and that's exactly what I did I pumped breast milk as we was told it was the best thing for her and we also used milk donors as I wasn't producing much due to stress. On day 5 of her life she had her first open heart surgery she was down for nearly 7 hours and was taken straight to intensive care where she remained sedated whilst she healed abit, after that she was taken to the ward where she could heal even more in order for her to come home, we was in hospital a total for 4 weeks and she smashed everything that was thrown at her she did us so proud.

we had been having check ups every month including all kinds of scans some of which she needed to be put to sleep for and some she didn't. we had a problem with blood clots in her leg after having a heart catheter so we was in hospital once again.

after all the results of these scans they saw that the pressure from her heart to her lungs was too high for them to do the next operation she needed so they needed to a different one before they could complete the next one and if they are unable to fix the pressure there's is nothing more they can do for her and her treatment will end and take her life expectancy down to around 20 years old.

As you can imagen we was absolutely broken inside hearing them words but we are hopeful and shes now having the next open heart surgery on Wednesday 15th February 2023 I have full faith in the surgans to help fix the pressure issue so she can get the full treatment she so desperately needs in total at the moment she will need a minimum of 4 open heart surgeries and I'm sure she will do great in every single one of them.

from the moment she left hospital after her first operation we have had visits twice a week to monitor her weigh and oxygen levels she's on medication twice a day to keep weight in check as she can afford to carry much fat around her heart.

I am embarrassed to ask for help but i dont have any other choice we are in a very hard place right now, we have 2 month to leave due to being behind on rent as both myself and my partner have had to come out of work to care of our daughter that means loans we had to take out to help us we can't pay back, bill and council tax is a struggle, even just having a baby is quite expensive and she always come first. Thank fully we have been granted a council house however this won't be ready in time for us having to move out of the one we are currently in.

I am so very appreciative of anyone who helps us and thank you so much for reading our story ❤️