Freddie was born on the 22nd May 2020 and as if being born during a global pandemic wasn't dramatic enough, he was also born with a congenital hemangioma.
Before I share Freddie's story, I just wanted to give some background on congenital hemangiomas.
Congenital hemangiomas are incredibly rare and unlike infantile hemangiomas, they form in the womb and are usually fully developed by the time the baby is born. The hemangioma is then split into 2 categories RICH (rapidly involuting) and NICH (non-involuting). RICH start to involute after birth and usually fully involute by the time the baby is 14 months old and NICH usually require surgery. Unlike infantile hemangiomas, there is no medication to help the involuting process.
I fell pregnant for the second time in September 2019 and we were so excited to add the fourth and final member to our family. Georgie, my first daughter, was thrilled to be a big sister. The pregnancy was going to plan, and everything seems totally normal. Once the usual morning sickness passed, I really started to enjoy being pregnant and knowing it would be my last, I wanted to make sure I relished every moment of it.
My husband, Jack, and I attended my 20-week scan where everything was going so well, all the measurements were spot on, brain and skull seemed fine, heart all working fine.
The sonographer then asked if we would like to know the sex or keep it a surprise. We'd already agreed a surprise, much to Jacks annoyance, but the next comment she said was far more of a surprise than I had ever prepared for.
She told us that there was something she had noticed that she wanted to investigate a bit more. The baby had what she later described in my maternity notes homogeneous hypoechoic mass growing on its forehead.
What the hell is that!? Basically, its doctor language for a soft tissue mass that they don't know what it is.
Jack and I looked at each other, I just remember thinking this isn’t right, that can’t be real, she's got it wrong. My baby is totally fine. I think I was so in shock that I took the calm route and held it together and just said ‘well all the other parts are fine and that's all that matters’.
Who was I trying to kid!? I just wanted to scream and grab the ultrasound equipment out of her hand and show her she was wrong and there was nothing there! She took the measurements of the mass and told us we would be referred to the Fetal Medical Unit at another hospital.
We left the hospital and I started to well up. Trying to hold it together while we walked out of the waiting room and as soon as I got into the car the gates opened and I couldn't stop them. I wailed and wailed until I couldn't breathe. Thinking now, it was clearly a panic attack or something and I'm lucky Jack was there to try and calm me down.
This is not how I expected this visit to go at all. I'd been counting down the days since I received the letter, so excited to see my baby again but now it was like a bad dream and I couldn't wake up.
What was this thing and why was it on my baby!? What was I meant to do now? Just sit and wait for an appointment when I didn't know how this was going to affect my baby or me or my pregnancy!?
We drove home and every time I managed to stop crying for a split second another dark thought would pop into my head. I know there is a chance it may just be superficial and cosmetic like a birthmark or something and I really hate myself for thinking this but my poor baby! People (including myself) can be so judgmental that I know that people will be grossed out by it or not know what to say and to be 100% honest, I'd be the same if it was someone else’s baby. I feel awful for saying that but it’s true.
By the time we got home, I'd calmed down a bit and had stopped crying for the mean time and that's when the googling started. I don't know why we do it and sometimes it's a blessing to have all that knowledge at your fingertips and other times, like this one, it can be a very bad idea. Especially given that I had no idea what this thing even was so how can I look it up? But when you're a determined, nervous, scared mother you'll do anything.
I didn't find too much on my first attempt which really got me down again. I just wanted to find some kind of Mums Net post or something about someone else who had this to reassure me, but there was nothing. Mainly because I had no idea what to google.
I then tried to call my mum to tell her about the scan, thinking I'd finally got it together enough but as soon as she asked if I was okay, I just started sobbing again. Mum tried to reassure me, and I again tried kidding myself that it would all be okay, and we wouldn’t get worked up until we knew what it was, and we could just deal with it. As soon as the words left my mouth, I knew I was lying.
By that point it was time for me to collect my first daughter, Georgie, from the childminders and this meant a welcome distraction for a few hours. After putting Georgie to bed that evening I went for a shower and again as soon as I was alone the crying started. I stood frozen in the shower for a good 20 minutes just hysterically crying and reliving the day.
I then spent most of the next day doing more googling and eventually found something that seemed promising. There were other case studies of descriptions like mine with something called congenital hemangioma which was kind of like a birthmark but a tangled group of blood vessels.
Could this be what it was? The more I read on the better it sounded. I read all about how this thing is split into 2 types, one that goes by itself usually by baby’s 1st birthday and another type that doesn’t but can be removed. I also finally found what I so desperately wanted the day before, a forum of other mums with the same stories!
It sounds so weird, but I loved reading their posts and getting some comfort from realising we weren't the only ones who have had this.
I immediately sent the links to Jack and my mum. I'd really thought I'd managed to diagnose the baby without the doctor! I know how ridiculous this sounds and I am in no way a medical professional, but I had to do something and for a brief period, I actually felt like I could cope with this. Even later that even when speaking to my Dad on the phone I sounded really in control and almost positive. That afternoon I had another call from the hospital. They had received my referral and offered me an appointment for Tuesday morning. I didn't even need to think twice before accepting it!
The following week we went to Fetal Medicine for our first consultant appointment where he re scanned me and confirmed that the mass was still there. He then said the words I’ll never be able to unhear, ‘It’s very rare and I’ve never seen anything like this before, I don’t really know what it is’. That is not what I wanted to hear, not in a million years. He was supposed to say, ‘oh yes, I know exactly what that is. It’s nothing to be concerned about and will go away by itself in a couple of weeks’. He continued look at it and then checked the blood flow.
It had a high blood flow, so he called it a vascular mass and took all the baby’s measurements and measured the lump again. He then ended the ultrasound and sat me up. Inside I didn’t want to, I wanted to keep looking at my little baby wriggling around. I didn’t want to face the reality of what he was going to say.
The doctor then went on to say again that he wasn’t sure what it could be but thinks it is some kind of tumour. He broke it down into 3 different scenarios:
The tumour stays the same throughout the remainder of my pregnancy and baby remains stable and happy until I am full term and I may be able to give birth naturally. Obviously, this is the most favourable and best outcome.
The tumour grows in proportion with the baby and baby remains stable until I am term and needs to be delivered by caesarean because a vaginal birth would put too much pressure on the tumour. This still wouldn’t be great, but we would cope.
The tumour grows rapidly, and the baby’s heart cannot cope. The baby would then need to be delivered by emergency caesarean at whatever point in my pregnancy.
I didn’t really know what to think or what to say. I’d just started getting my head around a possible caesarean but now combine that with a possibly premature baby as well.
The week following this appointment, we were sent for an MRI scan of the baby so see if there was any connection between the mass and the brain and to check for cancer.
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.
Towards the end of my pregnancy Covid-19 hit meaning that Jack could no longer come to any of my scans or midwife appoints from mid March. Thankfully, everything went well towards the end and the baby was growing fine, but it was still so hard going to the hospital 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 he would be able to cope with it. At the last consultant appointment, he was really happy with the baby’s 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 sister’s house for a sleep over for a couple of nights and Jack and I made our way to the local hospital. Again, thanks for the lovely Covid-19, 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. They 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 hell?!’. 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 a larger hospital to see if they wanted us transferred there of if we were okay to continue to be monitored at the local hospital. 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, totally 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 angry. 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 they were concerned about his heart and that’s why he needs specialist care and they don’t have the right people at here. Again, why wasn’t this thought of before? I was told that the right people would be there so where 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.
Freddie was taken to London at 1.30am the following morning and Jack made his way up to London to meet him there. They were moved into a rapid testing unit to be tested for Covid-19 and after a few more hours the test had come back negative and they could be moved on the Paediatric Intensive Care Unit (PICU).
Freddie was assessed and they advised that he was in high output heart failure due to the hemangioma. The heart failure also caused swelling and his lung efficiency deteriorate. They decided to sedate him and intubate him with a ventilator. He was then assessed by the dermatology team who decided to dress the hemangioma in a pressure dressing to try to alleviate the blood flow which would then in turn ease the pressure on his heart and help them to control the heart failure.
He was connected to an ECG and they had concerns over his blood pressure being very low and his heart rate very high. Trying to take all of this in whilst being 115 miles away was torture. I literally could not do anything. I couldn’t hold my baby’s hand as they inserted the breathing tube or hug Jack when they told him his baby had heart failure. I felt utterly useless. My family needed me now more than ever and I couldn’t be with them.
By 1pm I was finally discharged and could make my way to London. Thankfully my mum was available to drive me 3 hours to the hospital. We arrived at Great Ormand Street hospital around 4pm and Jack met us outside. I jumped out of the car and hugged him the tightest I have ever hugged anyone.
Then another panic attack started. I couldn’t breathe and the tears wouldn’t stop. I felt so overwhelmed by the whole situation and all I’d wanted for the past 12 hours was to be there with them but now I wanted to be anywhere but there.
I knew now I was there I had to face what was happening and see my baby in that environment. Jack, Mum and I went into the hospital and up to the PICU, I didn’t even think about the one parent rule and I don’t think anyone dared try to stop me. We were taken straight into a room with the PICU lead consultant, surgeons, doctors, and the dermatology consultant. They explained everything to me about the heart failure, lungs, blood pressure and heart rate just as Jack had already relayed to me.
They then advised that they wanted to take Freddie for an MRI to check for any other hemangiomas and to see where the blood feed to the main one was coming from. They then went on to explain the risks involved with this.
They advised that because of the limited size of the MRI scanner and the whole process, some of the machines that he was currently connected to, the machines that were helping to stabilise him, wouldn’t be able to be connected for the scan. Also due to the radiation, the doctors wouldn’t be able to be in the room to monitor Freddie so they would be reliant on the limited equipment to alert them of any issues whilst Freddie was in the scanner.
Then if there were any issues, they would need to stop the scanner before they could enter the room so they would not be able to respond as quickly as if he wasn’t in the scanner. I was then passed a consent form that I was asked to sign. The form basically said that they had discussed all the risks with me, and I was happy to proceed. These risks also included death. I didn’t imagine 24 hours after having my baby,
I would be signing a form accepting that my baby could die. I know I had every right to refuse the MRI and avoid this risk but then we wouldn’t know if there were any other hidden hemangiomas. They also wouldn’t be able to plan any further treatment for Freddie without the MRI which could also lead to death so either way we had to do something. Totally stuck between a rock and a hard place. I signed the form and told the doctors that I was giving my consent for them to do whatever they needed to do to help him.
I was then taken round to see Freddie. If I thought seeing him in NICU was hard, this was a whole different ball game. My baby had a massive bandage all around his head which covered both eyes, 3 tubes in his mouth all being held in place by a huge piece of fabric plaster which covered his cheeks and chin, the tubes just went in through a tiny hole in the plaster. ECG cables on his tummy and cannula’s in his belly button and groin.
He was totally motionless from the sedation. I didn’t know where to look. Where was my precious little baby? All I could see was his tiny little button nose poking out the bottom of the bandage. I felt so happy to see him but also felt so sorry for him. He didn’t ask for any of this and what kind of a start in life is this? As much as I know I didn’t do anything to cause the hemangioma or heart failure, I can’t help but feeling responsible. I’m the one that carried him for nine months, I’m the one who grew him inside of me. I just wish I could make it go away and make all this stop for him 💔
Two hours passed and we went back up to PICU. Freddie was back! I was so happy and relieved that he managed it. They told us that they would need to wait for the MRI results to come back then decide on whether to do surgery or not.
The surgery they had mentioned was called embolism, which is where they block some of the blood vessels to the hemangioma which then in turn slows down the blood flow. They said they would give us a call later to let us know. Jack and I decided we’d go and get some much-needed rest at this point so said goodbye to our parents and went to our accommodation.
We were both so grateful that Great Ormand Street hospital had provided us with some temporary accommodation for while Freddie was in PICU. The thought of having to go home and being that far away from Freddie filled me with dread.
The accommodation was nothing special, but it was a bed and a shower and that’s all we needed. I suddenly realised that I’d not expressed for nearly 24 hours. Those first few days are meant to be the most important for getting your milk to come in and establish breastfeeding. I thought I’d absolutely blown my chances now.
Completely torn between weather to try and make it work and then face the upset of my milk not coming in or just to give up I decided that I would give it a try. There was nothing else I could do for Freddie at this point, but I could make sure that when he does wake up, he has my milk ready for him and that would help him to get strong enough to get out of this place. I sat on the bed hand expressing colostrum more determined than I have ever felt.
Luckily, I was still pretty numb from the caesarean and couldn’t feel my incision too much. I kept popping the painkillers religiously as the last thing I wanted was to start being slowed down by that. I knew I’d totally overdone it that day and I definitely don’t recommend walking 12,000 steps the day after having a caesarean but at the time I really wasn’t bothered about my body. All I cared about was Freddie and it didn’t matter that I had just been sliced open and stitched back up.
At 11pm they called to say they had the result back from the MRI and they had decided that they wouldn’t do the surgery now and would re assess on Tuesday. I felt slight relief that it obviously wasn’t critical enough to need immediate surgery but also slightly in shock. It was then that I realised we might be here for quite a while if they wanted to wait another 3 days before just reassessing.
My mind then went to Georgie. We’d only arranged for her to stay with my sister for a couple of nights, she only had 2 pairs of pants! I felt awful, I just wanted a cuddle from my baby girl but also knew that I couldn’t leave Freddie now. I just hoped that she would be having such a good time with my sister and her cousins that she wouldn’t really notice the time and all I could do was to keep speaking to her on the phone and make sure we were back together as a family as soon as I could.
We stayed in PICU for 9 days and it was the strangest time of my life. Times goes slow and fast at the same time and one minute your living hour by hour then the next mothing changes for days and some days no change is good news and other days no news is awful. It’s numbness and pain all at the same time.
Everything is magnified and the highs are amazing, but the lows are the worst feeling in the world. Looking back now, the time in PICU seems very hazy. There was a lot of just sitting and staring, vacant and withdrawn from the whole situation. I was just surviving. We’d decided that I would be the one who went into the hospital with Freddie and Jack would wait outside. I seemed to cope with the environment better and it would help me to be near him for expressing and feeding him once I was able to. This seems ridiculous but those were the rules.
We’d message each other constantly and I’d send him photos and videos of Freddie and I’d keep popping out during the day to see him just to get out of the hospital for a bit. Things might have been so much easier if Jack could have been on there with me. All the doctors and nurses in PICU were outstanding and they really made an effort to keep me informed and involved with Freddie’s care. Even to the point of changing nappies when he had a catheter fitted, which seems completely pointless to most people but when your baby is 3 days old and you still haven’t changed a nappy, it feels amazing just to do something.
After day 4 Freddie was starting to stabilise. His heart was starting to cope better with the blood supply demand, and he was starting to try to breathe for himself.
The doctors started discussions about taking him off the ventilator which filled me with hope. They explained that once he was off the ventilator and stable, we could be moved to the dermatology ward, then once he started doing normal baby things like feeding for himself and gaining weight, we might be able to go home. This was music to my ears and I finally felt some relief. It felt like there was finally some light at the end of the tunnel. It might be a way off but at least. I knew it was there and it sounded so promising.
Later that day I finally got to hold Freddie. This was the first time I had been able to hold him since just after he was born, and it was the most amazing feeling. It’s all I’d wanted for days and even though he was still connected to the ventilator, it was the best and most meaningful cuddle I’ve ever had. I was overwhelmed with emotions and began to cry.
I finally felt like I had my baby back and it filled me with the determination and drive that I’d started to lose. It also made my milk production ramp up a gear. It’s true that oxytocin does wonders for your milk! I sat there for well over and hour just staring at this baby in my arms. I couldn’t believe that I was finally cuddling him.
During the time in PICU, the doctors found that Freddie’s stomach was struggling to absorb my milk. They took the decision to hold off giving him milk and just keep him on a glucose solution and give him some antibiotics to see if there was a stomach infection.
After a couple of days they tried him with a couple of millimetres and he seemed to absorb it much better but with the decision looming to remove the ventilator, he needed to be nil by mouth ready for that. It was so hard pumping all this milk that I couldn’t give him.
Life in PICU continued and finally on the 30th May, day 8, Freddie’s ventilator was removed. This felt like such a momentous day and I finally felt like we were starting to make some progress on the road to home. The ventilator was removed, and a nasal cannula fitted just to help Freddie adjust, after all he’d been on the ventilator for the majority of his life so far.
He quickly adjusted and the oxygen was weaned as the day went on as he started doing more of the work himself. By the afternoon I was able to have another cuddle with him and they started talking about being moved out of PICU. Just as before the cuddle was amazing and it really started to feel like I was getting my baby back and gradually more and more of his face was being revealed where different bits of equipment were being removed.
There were also starting to be less wires and cables which gave me some comfort to know that he needed less help. He seemed more aware of me and far more comfortable without the breathing tube. It was also much easier for the nurse to get Freddie in and out of the bed without being connected to the ventilator, so this meant more cuddles!
We finally got the best news we could have hoped for. Freddie’s nasal cannula had been removed so he was breathing completely by himself and was being moved off PICU and onto the dermatology ward!
I’m struggling to describe quite how this made me feel. I was obviously happy, but it was so much more than that. I was relieved, elated, excited, overwhelmed but also scared. The doctors and nurses in PICU knew him so well now and knew what was normal for him. They knew me and knew how our routine worked. What would the new doctors and nurses be like? Would they know what they were doing? Would they be as attentive as the PICU staff? Is there a pumping room on that ward? Would they store my milk? In hindsight these were all completely over the top questions, but I was just in such a bubble that this change made me feel like my head was going to explode.
I just tried to concentrate on the positive of him being moved to the specialist ward and try not to overthink the rest.
During the first few days in the Chameleon Ward Freddie was in a bay with 3 other babies and there was 1 nurse to every 2 babies. We settled into this new regime quickly and the nurses were just as brilliant as the ones in PICU. Freddie also started a feeding plan to reintroduce milk and see how his body coped with it. It was called a High-Risk Infant Feeding Plan and meant starting on 2 millilitres of milk every 2 hours then slowly increasing it until he finally reached the recommended amount for his weight. It was amazing to know that he was getting my milk again, but I still felt frustrated that I couldn’t feed him myself. He tolerated the milk well and within a few days he was up to full feeds through the feeding tube.
The new ward came with new challenges as well as new wins. With fewer cables it meant that we could start doing some more ‘normal’ baby things. I could change his nappy when I thought it needed doing, not when someone told me. I could put some clothes on him, although they were far too big, and he had his hand in a splint to stop him from trying to pull out the IV cannula in his hand.
I could also get him out for a cuddle whenever I wanted to, and I found myself just sat cuddling him for most of the day. It was nice to have the company of the nurses and with the slower pace than NICU they seemed to have more time to chat to me. They were also happy to take Freddie from me when I wanted to go out to see jack and I never felt like I was leaving Freddie alone. Plenty of times I would come back in and find an empty bed where Freddie would be off with one of the nurses wandering around the ward.
By the 3rd day on the ward I was finally able to start trying to breastfeed Freddie and this was the news I’d been waiting for. My milk had come in well and I was pumping good amounts, but it just wasn’t the same. Feeling him latch on for the first time since the day he was born felt so right and he knew exactly what to do. I felt so proud of both of us. Him for instantly knowing what he needed to do and me for believing and trusting in my body to do this.
It had been far from easy and had been the reason for many tears but knowing that I persisted and stayed strong made me feel like Wonder Woman!
Later that day I gave Freddie his first bath which was something I’d imagined we’d be doing at home as a family not on a hospital ward with a nurse helping me but I was still grateful to be able to do these normal life things.
The following day we were moved out of the bay and into a private room. This was because Freddie no longer needed constant observation from the nurses and to help prepare us for life at home.
As I wanted to exclusively breastfeed Freddie, I needed to move into the room with him so I could be there anytime to feed him. We decided that this would be a good time for Jack to go home and be with Georgie. Freddie was stable and I felt emotionally strong enough to stay there without him.
We also didn’t know how long we would be able to keep the flat for given that I was no longer staying there. We also didn’t want to take it up unnecessary when there was probably another family in desperate need of it. I felt happy that Jack was going to be with Georgie and that she’d start to get normality back in her life. I was missing her like crazy but knew we were on our way to getting back to her and she’d finally get to meet her baby brother.
Being in the private room bought its own challenges for us, one of these was extreme loneliness. I couldn’t just go out for a walk with Freddie as they wouldn’t allow him off the ward and I had no one to watch him for me while I popped out to get some food or even have a shower. I constantly felt as though I needed to wait until he was asleep to leave him. This was until one of the nurses started her night shift and offered to take Freddie while I went to get some dinner and have a shower. This small gesture meant so much to me and gave me the boost I needed to get me through the final few days.
Where Freddie has been zero by mouth for so long and just on the glucose solution, he had lost a lot of weight and this ended up being 20% of his birth weight. I was feeding him as much as much as I could, but he still struggled to gain weigh as fast as the doctors wanted. They decided to keep us in for a few more days, just until his weight loss was at a more acceptable level for a newborn which is between 7-10%. We finally hit the magic numbers and could go home on the 8th June.
I’ll never forget making the call to Jack telling him to come and get us. We were both so excited and couldn’t wait to get back home as a family.
Life back at home quickly settled into a new normal for us and due to Covid-19, Georgie was home from childcare, so we had a few weeks to really bond as a new family of 4.
Freddie is very much now just like a normal baby and is completely unbothered by the hemangioma. His heart is stable, and he is just on some diuretic medication to stop the fluid retention associated with the heart failure. He will be going back to London every 3 months for check-ups with cardiology and dermatology but other than that, he is a perfectly happy, thriving little boy. His hemangioma continues to involute at a fantastic rate and almost seems smaller every day!
To begin with it was daunting taking Freddie out in public and allowing other people to see his hemangioma but other than 2 shop assistants, no one has ever said anything about it. He does get a few looks from people, but they very rarely say anything to us, and now I find if you stare at them back they usually look away pretty quickly!
It’s been hard to process everything that happened over the 3 weeks after Freddie was born but having a great support network has really helped and I’ve been very lucky to have great friends, family and husband to help me through it.
Together Freddie and I will continue to get stronger and will help each other through this time. It’s not been easy and there have been days that I’ve wanted to give up, but he is a fighter and the least he deserves is for me to help him fight.
If you’d like to read more about Freddie’s story or would like more information about congenital hemangiomas, please check out my personal blog at https://vicki0807.wixsite.com/hemanmum
Vicki & Freddie
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If you like to share your story, do not hesitate to write to hemangiomamomma@gmail.com.
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