I had the privilege of connecting with Rebecca Bates in the United Kingdom, wife of Dan and mother to Emmy (15 months) and Daisy who was born earlier this year and passed away 7 days after her 23 week and 1 day birth.
Rebecca is speaking out about infant loss and premature birth. Her goal is to take this struggle and help others in the name of her beautiful angel, Daisy.
Deb Discenza (DD): Rebecca, welcome and please tell us Daisy’s story.
+1 weeks pregnant.
Rebecca Bates (RB): After being seen by the nurse I was feeling ok because all the checks were fine and the baby’s heart was beating away nicely. The midwife just said I’ll get a doctor to come and have a quick examination just to rule out any infection. Upon closer inspection I just heard the doctor say, “You are not going home, your baby is on her way” just then and I burst into tears. I quickly phoned Dan to let him know that he needed to come to the hospital. I was quickly moved to a private room where consultants and doctors came and went discussing what we would do – injections, operations – lots of information was thrown at us within the space of an hour. I took none of this in as all I could think of was she’s going to die because she’s not ready to be born!!
So on the 23rd April our lives changed forever and it became a week from hell. On the morning of, I woke up with little niggles in my stomach not really thinking much of it I continued on with our daily routine thinking that I just had a bit of an upset stomach from eating too much white bread! As the morning went on the pain was getting a little bit more uncomfortable but still didn’t feel like it was going to turn into anything alarming. By about half 1 I decided I was going to give the midwife a call and just ask her to check me over by the time I got there the pain was easing off but it was coming and going regular.. I was starting to worry by now as I just had this gut feeling that she was ready to come out but I knew things wouldn’t be good as I was only 23 weeks. After a short amount of time my parents had arrived at the hospital I was moved to the labour/delivery ward as things were quickly starting to become very uncomfortable. Within a few hours of trying to get things under control with injections to strengthen her lungs and try and control the contractions the decision was then made to transfer me to Newcross Hospital by blue lighted ambulance (which was a very bumpy ride whilst having strong contractions). Once there I was then put in another delivery room with lots of nurses, doctors and consultants coming and going explaining lots of information none of which I think I fully took in at the time. I had been there about an hour and then my waters finally broke ‘spraying across the room like a rocket’ I did two pushes with the help of gas and air and before we knew it there she was, this tiny little baby ?.. Daisy had arrived at 10:21 that evening.
The doctors had to help Daisy to breath to start with and then she was put on oxygen and transferred down to the NICU ward in what I can only explain as a space ship the bed/box she was moved in was amazing! We were told that the chances of her making the journey down to the NICU ward and through the night were slim, so I tried to spend as much time as I could once I was able to move down to her! Being in hospital with Daisy was extremely hard because I missed Emma (aged 1 at the time) so much and it was hard to try and get the balance with where to spend my time.. things were very tense!
The next day I was able to change Daisy’s nappy and give her some colostrum. Over the next few days things were very critical but she was stable and doing very well for the age.. although very very tiny weighing just over 1lb. She was amazing and such a little fighter. The 7 days that we were in hospital all blurred into one so I can’t remember the days in which things/events happens. Daisy had blood tests/ scans and blood transfusions daily how many I cannot remember. But it was a few days later that one of the consultants that was on the night shift had noticed a little pocket of air developing around Daisy’s intestine.
After further scans and checks (she has had so many already) it was decided that we would then be transferred to Birmingham children’s hospital PICU to be operated on. I was extremely worried because the staff at Newcross had been amazing and I felt very comfortable with them looking after Daisy, I couldn’t thank them enough! Once again Daisy was transferred in an even bigger space ship with so many tubes and wires. In the back of another blue lighted ambulance with my mom, so many things were going through my head. Once we arrived at Birmingham they were rushing around trying to get her all sorted as we were told that she would go into surgery straight away. After a fair few hours later, much later than we had anticipated, the surgeon that was going to do the operation came to see us so I could fill out some forms and sign to say I understood what was going on.
I think if I’m honest I didn’t really know what was going on and just signed because he was the specialist and he knew what needed to be done. Every moment was so overwhelming at that point. Daisy was taken down to the surgery, we said goodbye and walked down to the lifts with her and her army of doctors. The next few hours were horrible waiting, waiting and more waiting to hear if she was ok. Once back on the ward we were told how things had gone. The area in which they operated on was more infected than they had originally thought so they removed 15-20cm of her intestines and had given her a colostomy bag. But she was still extremely poorly and the next 24 hours would be critical.
That night I went home with Dan, Emmy stayed with her grandparents so that we could try and get some sleep. We went back the next day and Daisy was still sleeping and very unaware of what was going on.. she was still heavily relying on the oxygen even more so now than she was at Newcross. I sat with her for a few hours whilst Dan took Emmy off to play in the family room as it was quite distressing for her. I felt sick leaving Daisy to go home but I knew she was in the best place and there was nothing we could do but wait and see if she got better. The next morning feeling a bit better as no one had called in the night with bad news and the nurses had said that she had a good night but they were just waiting for her doctors to come and do there checks.
Emmy and I headed off to Sainsbury’s with my step mom to get some shopping and get a bit of normality. We were having some lunch and my dad had phoned me to say that he had just been to see Daisy but the doctors wanted to talk to us and when would we be going in to see her? After this I just felt numb and couldn’t stop thinking about her. We finished our lunch and we finished our shopping. Mentally I think I was dragging things out not wanting to go to the hospital because I knew deep down we were going to have to make a decision that I didn’t want to think about it. Driving to the hospital I don’t really understand how I got there in one piece as I don’t remember the drive. My mind was in overtime.
When I arrived, my mom was there and the doctors finally came and took me off into a side room down the hall. I was told that Daisy was still extremely poorly and wasn’t doing anything for herself, she hadn’t passed urine or poop since being there and was holding a lot of water in her body. We could see this as she had gone so swollen. After our short but to the point chat I asked the doctor where we go from here and he said I would let her have another 12 hours and then we would have to make a decision to carry on or not. But there and then I had made the decision that it wasn’t fair on her to carry on. The poorly little chick pea had been through enough and the likelihood of her surviving the night was slim.
The doctors then agreed that this would be the best route going forward as they couldn’t do anything else for her, the operations that they could have done just weren’t safe enough or suitable for babies that small, So they would start to make arrangements for us to be moved into a side room for us to spend time alone with Daisy.
But what I will say is that Daisy passed away peacefully that night in my arms with her grandparents by our side the whole time. That was by far the worst but most peaceful and in some way comforting night of my life! Daisy was no longer suffering ?… Those 7 days were such a whirlwind. There isn’t a day that goes by that I don’t think of her and think of what would have been. But I am a firm believer of everything happens for a reason.
DD: I am so sorry for the loss of Daisy and I am beyond amazed by her will to fight and your family’s love and focus on freeing her from the struggle at the end. That is so hard a decision to make. How was the team with you around these decisions. Did they take time to help you through Daisy’s death before, during and afterward? What else would you recommend to professionals reading this interview?
RB: The team of doctors and nurses that we had a round us were absolutely amazing. They had all the time in the day to speak to us and if we needed anything they were there to answer any questions or queries we had. The nurses even took the time to give Daisy a bath and dress her once she had passed away. The aftercare was outstanding from all the hospitals we were seen in.
The only thing I would of probably have liked more of is information on what is going on at the time in writing as it is very hard to take this in at the time. It would be good to have it to go back and read once you on are your own or at a later stage.
DD: You are interested in giving back to the community in some form, potentially a non-profit. Do you have any idea of what you would like to do?
RB: As we are in very early stages with raising money we don’t know where we are going to go with it and whether or not it will be a non-profit. We just need to see where the future takes us as I have a young family to provide for, too.
Monies currently being raised will be going to parents staying in the accommodation at the Newcross Hospital Wolverhampton UK. The hospital is also going to help us put on a fundraiser in the community to try to help raise even more money. Not only are we going to try and provide hampers full of essentials we would also like to help out the bereavement units with babies Moses baskets.
I have also set up Facebook page and Instagram page where I want to try and get people to engage with each other and talk about baby death. Lots of people go through this, many more than one would think. I would like to build a community where people are able to come together and help each other in what can feel like a very lonely journey.
DD: I agree, infant loss is much more common than people realize, mainly because it is not talked about as openly as it should be. This is an incredible start. What is the website for the fundraising page?
DD: Rebecca, thank you for sharing your incredible story with us and all that you are doing in remembrance of sweet Daisy. Anything else you would like to add?
RB: Just that lots of people go though this a lot more than we think and I would like to build a community where people are able to come together and help each other in what can feel like a very lonely journey.