Going back to the start, after a routine 12 week scan at our local hospital the midwives noticed what they thought was the umbilical cord looking slightly unusual in shape and size. A week later we had another scan with a specialist and were told that Myla had a condition called Gastroschisis and she would start her life up at St Georges. Gastroschisis is a birth defect in which the intestines develop outside of the babies stomach through a hole generally next to the belly button. In Myla’s case, which we found out when she was born, it was most her bowel and part of her stomach. Finding this out so early on was such a shock and it felt like the world had stopped for a bit. Me and my partner knew nothing about gastroschisis and knew nothing about what it meant for our little one and her future. At first it was hard to remain positive, sitting in the waiting room for scans worried about them finding something else and worried that she was still growing correctly was always a struggle for me. Specialists still aren’t 100% sure what causes the defect, which was quite challenging to accept, I couldn’t help but feel like it was something wrong with me that had caused the defect; but that mentality all changed once we started our appointments up at St George’s. After many appointments with Basky and his amazing team we knew Myla had a great chance and we would be looked after and we found out so much information on her condition and how so many babies with the same condition have been within the NNU there.
Once Myla was born she was immediately taken to have her bowel wrapped in order to keep any bacteria out whilst she made her way down to the unit. I was able to meet her for a couple of minutes before she went down and those few minutes were so precious and we are forever grateful that Myla was stable enough for us to do so.
Going into the unit for the first time was such a surreal experience and one of which feels like a blur. The sounds of the machines, the different lines and numbers in the monitors, the amount of wires on Myla was all a lot to take in, especially when you know it’s relating to the stability of your little one. The nurses made it their job to help explain everything to us so we felt comfortable in knowing what each little beep of the monitors meant. Day after day, Myla’s bowel was pushed in more and more through a silo that was inserted when she first got to the unit. The doctors where please with the progress of it going in but it took longer than they had hoped due to how tiny she was. It took a while for her body to cope with the bowel being inside and at points it put strain on her lungs due to the pressure. This was such a tense time as we didn’t know how she’s going to cope with each pinch of the silo. At points it felt like Groundhog Day as I felt like nothing was changing and I found myself questioning if everything was going to be alright. The nurses again were amazing with this and continued to support us and guide us through everything and I’m still appreciative and grateful for their support to this day. You could tell each and every one of them genuinely cared about each baby they cared for day by day and that generosity and kindness continues to mean so much to me.
First touch as a whole is the most amazing charity that we are continuously in awe of. The little things like a little Halloween book for us to read to her, to a little knitted orange hat, little material patches that I could put in her incubator that had my scent on to help us bond as we weren’t able to hold her are a tiny amount of the things considered by them that at the time you don’t even know you needed. The encouragement of bonding with Myla was such a priority for them and it meant so much as it was hard seeing other parents able to hold their little ones. One thing that meant a lot was the pictures throughout the night. Leaving was always the hardest thing for me; hoping that she was going to have a good night, so the pictures to see that she was doing well and she was comfortable made all the difference to my peace of mind. The indescribable dedication and love they put into everything they do there is next to none.
The parent room enabled us to take a step away without having to go too far and it was always stocked with snacks and drinks so you could look after yourself and make sure you were in the best health to deal with each day. The dedicated expressing room allowed me to meet other mums who each had their own journey and allowed me to meet mine and Myla’s now best friends, as it was a safe quiet space to bonded over such a unique experience. We will forever be appreciative of being brought together in such a chaotic time in our lives and we now love meeting up and seeing how far they have both come!
After Myla’s bowel went fully in she became very unwell. There was a slight complication with the surgery which caused her to have to go on more medication, be ventilated and on top of all of that she had contracted sepsis. Again, like when we found out about Myla’s condition, the world stopped moving. I genuinely hand on heart cannot thank enough every single nurse that looked after Myla within that time. It was such a scary point and at times it got very dark. The part that continues to amaze me is the empathy that the nurses feel for both the babies and the parents. The guidance we got from the nurses at was next to nothing and it makes me emotional to think about it. It was like they could feel how you felt without you even having to say it, and they just knew how to help support you.
Once she started to head down the right path I was able to hold her for the first time. This experience was made so special by the nurse. I was all by myself but she made me feel comfortable and even offered to make pictures and videos so I could forever have such a special moment documented. That day will forever be one of the best days of my life, finally holding my little girl after days of not knowing if she was going to be okay.
After nearly 40 days in the NNU and many ups and downs, our little Myla was finally discharged to go home. Throughout that time we were able to help change her, check her temperature and other little things that were so valuable as first time parents and made us feel more involved with Myla’s care. She tolerated her milk incredibly and she hasn’t stopped since! The massive milestone for us was when she finally had her long line removed and could put clothes on. Something so small for most but such a breakthrough for our little fighter, all the staff who had been involved with Myla’s care were equally so happy for her.
Myla has just celebrated her first birthday and continues to amaze us every day. Her strong will and determination in life was learnt from a young age with help from the amazing staff at St George’s NNU. We still have to go for check ups, so we get to see and pay our thanks to each person that helped Myla as much as we can, although nothing I can say or give will ever reach what they were able to do for us. So I just want to say a massive thank you to the incredible staff at St George’s and first touch. You truly showed us what unconditional support and compassion can do for people and we would never be here without you. We will forever remember each and every one of you and how much you positively impacted our lives and you gave my little girl the best chance at a start to life x
Emily, Callum and Myla xx
