6 months later…..
Wow, I’ve just re read this for the first time and I felt like I was re living all those moments. I'd totally neglected this for the remainder of my pregnancy so will now try to recap what happened in the lead up to the birth and everything after.
We went along to the MRI scan which was very overwhelming. Southmead is such a serious hospital and it made everything seem very real. After 45 minutes in the scanner we were then sent on our way. I was desperately hoping they would tell us something, but they just said the results would be sent to the consultant. After a few days we were back to see the consultant and he reported that the MRI scan was all clear, there was no connection to the brain and from what they could tell so far, it seemed non-cancerous. This was such a relief, 2 major boxes ticked off and it seemed like we were really winning. He then scanned me again and he found that the lump had grown, slightly more than the baby had but the baby was still okay, and his heart looked good. We were then taken through to another room and met a dermatology doctor who finally confirmed that she believed it was a hemangioma. She said she’d seem these before but never on the forehead but of the ones she had seen before, they did involute themselves without medical intervention. I felt so relieved to finally have a name for it and knowing that what I had read was correct and that there were so many positive stories.
We continued having regular scans for the remainder of my pregnancy going from every 2 weeks for a couple of months to then 3 and 4 week intervals. The hemangioma continued to grow but thankfully it grew in proportion with the baby and the heart was coping absolutely fine. The consultant contacted Bath hospital and arranged for me to have a planned caesarean there and a senior surgeon would be performing the surgery. They assured me that all the right teams would be on standby should the baby need any more support.
Towards the end of my pregnancy Coronavirus hit meaning that Jack could no longer come to any of my scans or midwife appointments from mid March. Thankfully everything went well towards the end and the baby was growing fine but it was still so hard going to Bristol alone just in case they did find a problem.
The caesarean was scheduled for the 22nd May which meant I would be 39 weeks so baby would be born full term. This was great news and meant that if baby did need surgery, there would be much more chance that they would be able to cope with it. At the last consultant appointment, he was really happy with the babies growth and heart functionality. He believed that the baby would be fine after delivery, could be on the ward with me and we would be discharged and sent home the following day. This all sounded so amazing and made me feel so positive and actually quite excited.
The 22nd May soon came around. We sent Georgie off to my sisters house for a sleep over for a couple of nights and Jack and I made our way to Bath hospital. Again, thanks to the lovely covid, Jack couldn’t come into the hospital until 30 minutes before we went into surgery. I’d been advised by my midwife that with us being a high risk case, we would probably be the first surgery of the day but unfortunately this wasn’t that case. 7 hours later I was told that I could call Jack in from the car park and we’d be going down to theatre about 2pm.
Jack came in and got into his scrubs and hairnet. This instantly made me feel so much more relaxed as he was messing about and making me laugh. This was just what I needed.
We went down to theatre and they started prepping me and gave me the epidural. Within 30 minutes they told me there were going to start and by 2.35pm our baby was born.
The lowered the screen and lifted our baby over the top. That’s when my heart stopped.
It's hard to recall the exact feeling that I had at that point. I had the initial burst of love mixed with ‘what the fuck’. The hemangioma was much bigger than I thought it would be and there were massive pulsing veins on the head and the baby was very swollen. They then confirmed that he was a boy and seemed healthy. Jack cut the cord and they took the baby off to check him over before he was returned to me for some skin on skin while they stitched me back up. The longer I held him for the more I could rationalise my feelings. Yes, it was big and angry, it covered his right eye and when I first saw it, I though he didn’t have an eye socket. The top of it was all ulcerated and you could see the blood vessels. It looked horrendous but he was still my baby boy. I was able to start seeing past that and I was just so happy he was here.
They sorted me out send sent us through to recovery. They just advised that they would continue to monitor the baby but everything seemed fine. After a very short 30 minutes in recovery it was time to move up to the ward. This meant that Jack had to leave. This was so hard, I wanted more than anything for him to stay with us but with the possibility that he would be back the next day to collect us filled me with hope.
I started to feel nervous as we were wheeled up to the ward knowing that this is the first time people would see him. What would they say? I had to sit in a room with other people with normal babies, would they stare? Would they say anything?
No is the answer to that! No one batted an eyelid, it was all in my head and really no one was bothered about him. They just left me to get on with it and all the other mums were too busy with their own babies to pay him any attention.
I gave mum a call and updated her on everything and started trying to feed the baby. He latched on perfectly and fed on and off for about 30 minutes. It felt totally wonderful that I was able to breastfeed him and have him there on the ward with me. Things felt pretty normal and I felt really positive that we’d just be in overnight and could go home tomorrow.
Then things started to get interesting.
A doctor came round to see us and was concerned about the babies breathing and the lump. He took some pictures of the lump and said he was just going to call Bristol hospital to see if they wanted us transferred there of if we were okay to continue to be monitored at Bath. He also mentioned that they might not need us to be transferred until after the weekend. That made me think maybe we wouldn’t be going home on the Saturday and maybe things weren’t as simple as they seemed.
At 6pm the doctor reappeared with another doctor and a nurse. They then told me that their concerns were growing, and they’d like to take the baby down to NICU to monitor him more closely. I thought they might have given me a bit of warning but no they just took him from me, and they were gone. I was left there in the bed, completely numb from the waist down and feeling totally helpless. What the hell was happening?! How had it all gone from being so fine to this?
I called Jack and completely broke down. I had no idea what was happening, and I couldn’t do anything to help it or make it better.
A couple of hours later a nurse appeared and asked me if I would like to go and see my baby. If I could have jumped out of the bed and ran down the stairs, I would have but I was still numb and had to wait for her to get the wheelchair. This was the longest 10 minutes of my life, what was taking her so long!
She wheeled me down and I’ll never forget the moment of seeing my baby in that incubator. My heart ached for him. I wanted to pick him up and take him away from it all. He looked so peaceful, but all the cables were scary and monitors beeping in my ears.
A consultant came to see me and updated me on what was going to happen. They had spoken to Bristol and decided that it would be better for him to be taken straight to Great Ormand Street Hospital in London as they are more specialist in this.
I felt so confused and shocked. This had never been discussed before and Great Ormand Street seemed very serious and scary. All I knew about that hospital was that’s where really sick children go. My baby didn’t need that, he was fine.
She then went on to explain further about what was going on and told me that they had no access to any of the consultant scans or MRI results from my pregnancy. This seemed ridiculous, what was the point in having them done if now when we actually need it, we can’t get the information. I felt so pissed off. Why wasn’t this all sorted before? Why couldn’t they access it? Why was it given the okay for him to be born here if they don’t have the right information?
They told me that the were concerned about his heart and that’s why he needs specialist care and they don’t have the right people at Bath. Again, why wasn’t this thought of before? I was told that the right people would be there so where the fuck are they now? I was so angry but at the same time felt so helpless. All I could do was let fate take hold and ride this rollercoaster.
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