Blaze

Blaze Ginnifer Clark – born 11/05/2021, passed away 13/05/2021

Initial Scans

My story begins at my 20 week scan. I was actually 20+6 when this took place. My previous 12 week scan revealed I was measuring behind and something did not look right with the baby’s umbilical chord closure. I was told this was nothing to be concerned about as I technically wasn’t within the 12-14 week bracket and to come back at 14 weeks to check everything was ok. I was reassured this was normal and not to worry. 14 weeks came and everything was fine, panic was over. I also declined the nuchal test because in my mind the results would not change the outcome of having my baby, good or bad.

So back at the 20+6 scan the sonographer went very quiet, I was ok with this as I know they need to concentrate on everything. However the sonographer pointed out some issues with our baby’s ventricles in the brain, an abnormality was also picked up at the base of the spine and there appeared to be a club foot. I was scared, all alone at my scan and I was scared even more when it was recommended that my husband should come into the antenatal unit with our then 10 month old son before discussing any more on the matter. I was placed into a private room waiting. I wasn’t told my baby’s gender or given an ultrasound picture. When my husband and son arrived we were talked through the findings and told we needed a specialist scan, but the outcome didn’t look positive and it appeared our baby had spina bifida.

Fast forward to the specialist scan at another hospital, it was confirmed our baby had spina bifida and potentially hydrocephalus. It was also noted that I had a higher than normal amniotic fluid. At this point I was almost 24 weeks pregnant and suddenly myself and my husband were given options of termination, continuing the pregnancy and even the possibility of fetal surgery in Belgium. It was a lot to take in. The fetal surgery had so many high risk factors to my own life and an amniocentesis would need to be performed prior to this, plus the surgery would have to be carried out at 26 weeks. This gave us little time to decide what was best. We declined the surgery as the specialists could not guarantee how it would impact the spina bifida condition and there were too many unknown risks to my health and any future pregnancies. So it was agreed that I would have four weekly follow up appointments to check on the growth of our baby, monitor the head growth in particular and the volume of amniotic fluid.

At roughly 26 weeks I had a follow up scan, this time it got worse. I had now been diagnosed with severe polyhydramnios and it appeared that our baby did not have a diaphragm and the stomach was measuring three weeks behind everything else. (We also knew at this point we were having a little girl after asking the question). The specialists decided that I needed to have a fetal MRI to investigate further and this was the first time that potential CDH was mentioned (Congenital diaphragmatic hernia), a condition with a 50/50 chance of survival all by itself.

 MRI Findings and Amniocentesis

After the fetal MRI and waiting a week for the results it was confirmed that our little girl had the following; Spina Bifida / high possibility of hydrocephalus / CDH / club foot / small jaw / cleft palate and cleft lip / abnormality of the ears / potential issues with the eyes - although this was not clear.

At this point I was 27 weeks and I decided based on these results to have the amniocentesis, something I agreed prior to the MRI based on whether they confirmed the CDH. It was also difficult for me at this point as the midwives I spoke to once again offered me a termination and told me that it was highly likely our little girl had a chromosomal or/and genetic condition based on the amount of abnormalities. We declined the termination once again. I was then advised that she was highly likely to pass away whilst I carried her or I could have a premature birth. This was highly distressing for us to deal with.

The following days we met with the genetics team and the specialists once again, I had the amniocentesis completed and bloods taken from myself and my husband for genetic testing. I honestly thought the amniocentesis was a formality and our little girl just had these conditions and that was all that there was to it. At just over 28 weeks I received a phonecall from the midwives confirming that our little girl had Trisomy 18. I knew straight away what that meant, I had researched and researched, at this point I felt I knew everything there was to know about Trisomy 13, 18 and 21. And once again terminations, passing away and premature births were all mentioned to me. The midwives referred me back to the original hospital and said that if she does make it to birth then spending time with her would most likely be in her best interests rather than surgery etc. I felt at this point very let down and upset that she was being given up on because of the Trisomy 18. I decided not to let this happen for her sake.

 Birth plan and decisions

After being referred back to my original hospital, my regular midwife went out of her way to help me get a plan for our little girl’s birth. I had growth scans arranged and consultant appointments made to go through how I would give birth, when to give birth and what will happen once our girl arrived. My midwife even attended every single appointment with me and my husband for support and to ensure I was not acting as the middle man in providing information. This was amazing from my midwife, she was so supportive to our whole family and helped me get across to the medical professionals my concerns and fears.

In my consultation appointment it was agreed that I needed to deliver at 37 weeks due to the polyhydramnios and the multiple conditions our girl had. I opted for a c-section as induction failed for me in my first pregnancy resulting in a traumatising emergency c-section under a general anaesthetic. The specialists all agreed to me having this c-section and felt that it would also be beneficial to our little girl as they were to have all the baby doctors ready. We expressed that although we knew that our girl could potentially be born stillborn or die shortly after birth, we wanted her to be treated as best as possible for her conditions in their own merit and not ignored simply because of the Trisomy 18. This meant for us as much medical intervention as possible to give her a fighting chance. We really felt listened to and this was agreed by the specialists. I was still warned of potential premature birth, but this was because of the polyhydramnios at this point as it was so severe.

We now had three weeks until our scheduled c-section date and we felt that this experience at this hospital was totally different to the other hospital. I was so glad to be returning to them because I now felt that myself and our little girl were in the best possible hands.

 Birth of our beautiful girl Blaze

On 11th May 2021 myself and my husband arrived at the labour ward as directed by our midwife. We were placed in a special family room called the butterfly room which was quite spacious and there was a linked room which was less clinical so we could be together as a family without the daunting pressures of a hospital environment. I was prepped and ready to go into theatre. It suddenly became quite overwhelming for me, I started to feel scared and anxious about the surgery, I felt quite vulnerable due to the amount of people around me. I personally felt that all this was heightened by the fact that I didn’t know what would happen the moment our little girl was born. The specialist consultant had always told us that it may be extremely difficult for them to get an airway for our girl and this would need to happen within minutes, if they deemed it too traumatic for her or it wasn’t working then they would have no choice but to stop trying. We knew this was a possibility and it was a terrifying thought. I was also scared about the potential abnormalities our girl had, how badly was her face deformed? This was only scary to me not because of how she would have looked, but because in my mind I had been blaming my body on failing her, letting her down. It’s clearly all my fault. I know this not to be true, I know this was nothing I or my husband could have prevented, but in your emotion you still tell yourself these things.

My husband was with me by my side through everything, the midwives were also with me, the anaesthetist was making me smile and laugh, the other medics in the room were supporting me. There must have been at least 20 people in that room with so many different roles and skills. One midwife was there documenting the whole thing through pictures for us. I was very emotional and these people alongside my husband got me through this.

At exactly 09:45 our little girl Blaze was born, weighing 5.1lbs. I was struggling with my movement and eye focus, but I was able to see her briefly before resuscitation was performed on Blaze. I could just see that there were around six to eight people assisting Blaze and my husband was with her too. We agreed that he should be with her, I would rather be on my own or with the medics knowing that Blaze was with her Daddy. It was difficult for my husband as he wanted to be there for the both of us, but obviously that wasn’t an option. He stayed with Blaze and it was such a scary time as we didn’t know if an airway would be possible. Luckily it was, we were told that she had no cleft lip, but the cleft palate was there and it made it difficult to obtain this airway but they had managed to do it. My husband cut the cord, something he didn’t want to do because it made him very nervous, but he was convinced to do it and it’s now something he is so glad he did get to do.

Blaze was given to us both for a quick cuddle whilst the specialists were hand pumping oxygen to her. After our cuddles Blaze was then taken to the NICU where she would need to have x-ray’s and be taken care of.

I was then sent to a recovery room for a very brief period before returning to the butterfly room.

 NICU and the next decisions for Blaze

The next two days Blaze was cared for in NICU, the nurses in NICU were so amazing, for the first few hours my husband was visiting Blaze as I was unable to move, this upset my husband as he felt bad I could not spend the time with her, but I said that I felt ok knowing that she was not alone and he was with her which brought me comfort. Later on the 11th I went to visit Blaze in the NICU, I then became very emotional as I was so happy she was here, but I was very sad that she was going through this. I became quite overwhelmed at it all. I felt frightened to be in the NICU until I actually went there. Once I was there the machines, the bleeps and noises, the nurses and consultants everywhere didn’t bother me at all because I was just too mesmerised by my beautiful little Blaze, that’s all that mattered to me. My husband once again was by my side through all this.

The following day I visited Blaze and was able to have a cuddle with her, this was both amazing but also turned out to be a complete nightmare for me and my husband. Whilst holding Blaze she became slightly agitated and had knocked her ventilation tube. Suddenly nurses were around me checking the tube and running tests on her breathing before alerting the specialist doctor in the event of Blaze stopping breathing, this was all going on over my chest and I was terrified, was she going to die right at this very moment. Luckily she was fine, the tube was secure and Blaze was placed back into her incubator crib which made me feel relieved. But from that moment I had made my mind up I wanted no cuddles with her whilst she was in the incubator and on a ventilator. I didn’t want the fact that me holding her could cause any issues like this again as I knew cuddles could come later, for now her safety and getting better were the utmost importance to me. For Blaze in particular due to the spina bifida she had to always be on her side and turned every so many hours too. She could not lay on her back like other babies due to the lesion at the base of her spine. The x-ray the day before confirmed how severe her CDH was and there was also a small hole in her heart, although this is one of the few issues that Blaze had which did not cause concern for the medics. But they did say that this may actually help with some of the pressure that could build within her lungs.

So Blaze had passed the initial tests to obtain an airway, become stable etc to then be able to discuss surgery options.

Over the course of 11th and 12th May we had meetings with the specialist consultant caring for Blaze and a couple of the surgeons from another hospital. It had been explained to us the severity of Blaze’s CDH condition and the difficult airway. We were being asked what we wanted to do for Blaze whilst listening to the advice of the surgeons. I expressed straight away that I wanted what was best for Blaze and if that meant surgery I wanted her to have it as I wanted her to be treated for the individual conditions and not because she had Trisomy 18. I explained that yes I knew she might only live for less than a year, but that didn’t mean her life was worth any less. In the end I felt like I was letting my heart rule my head, that no matter what the medics said I was thinking you’re wrong you’re wrong you’re wrong. In the end one particular surgeon did the most amazing thing, he said to us both that they give us the option of what to do, but maybe this isn’t the best for all families and that he would organise a meeting with various surgeons, transport teams and specialists and come to a consensus of what would be best for Blaze. We both agreed to this, we needed these people to tell us what we should do. We needed that. Yes we wanted surgery for Blaze, but we were ignoring in our hearts that she was too weak for the surgery, that she would unlikely make it through being transported to another hospital. We knew all this, but we needed to hear from the medics with complete honesty rather than recommendations.

Later on 12th May we were informed that around 10 to 12 specialists had all discussed the various implications of surgery for Blaze and it was simply not the right thing to do. Her spina bifida could not be operated on until the CDH was operated on, this was problematic because she needed to recover laying flat on her back, and the spina bifida prevented this. Her breathing was also an issue as she could not breathe by herself and she was simply too weak to go through this procedure. It was decided that on 13th May her tubes would be removed and we would spend the time we had as a family creating memories. At this point we knew that no matter what happened we were going to lose our girl, there was nothing that was going to change that outcome.

 Blaze’s passing at two days old

On 13th May Blaze was moved from NICU to our butterfly room to spend time with us as a family. The hospital allowed us to bring visitors in if we wished to spend the time we have left before the tubes were removed. We knew once the tubes were removed we had either minutes or hours, it was hard to say how well she would breathe on her own. We agreed to have our son Zane come to see his sister. Zane is only 14 months old, so we knew he wouldn’t understand or know what’s happening, but once he is older he will cherish the fact he was there as we cherished him being there. We also had a charity called Remember My Baby come to do a photoshoot with us all before the tubes were removed and whilst Zane was there too.

We had a little naming ceremony in the hospital as a family and with the photographer there. It was so happy for us all in those moments. Finally after a couple of hours we had the decision taken away from us, Blaze had this time completely pulled her tube, my husband was holding her at the time and none of us were aware of this. It became very distressing. The NICU midwives said unfortunately it has completely come out and now is the moment to remove all the tubes, they were amazing with us and told us both as we were very distressed at this point, that Blaze had made this decision for us. This is something that brings us both comfort, particularly as we reflect back on things and question if we made the right decisions.

At 17:45 approximately the tubes completely came out and we spent the time together as a family cuddling Blaze, stroking her hand, holding her hand and talking to her. It was so emotional for the both of us, we could physically see our little girl was going before our very eyes. It was so clear to us all at this point that she simply could not breathe on her own at all, the ventilator was the only thing that was keeping her alive. At 19:26 our beautiful girl had passed away.

The next few days were all about making memories. The midwives and nurses made casts for us of her hands and feet, they washed and dressed her for us (something me and my husband were too distressed to do ourselves), we were given so many memory boxes and provided with a teddy bear from another charity called Aching Arms. We had appointments organised for us by the hospital, we were given the best possible care and support we could ask for from everybody at that hospital.

 The week after

On Friday 14th Blaze was collected and taken to Derian House, a hospice based in Chorley, Preston which we had visited for a tour whilst I was still pregnant. They allowed us to stay at the hospice to be with Blaze for seven days whilst she rested in their sunflower room. A beautiful room set up like a little nursery where Blaze rested in her little basket in a cot bed. It meant that me, my husband and our son Zane could spend as much time with her as possible before the funeral and create more memories. This was so difficult for me, but also something that I am happy we did. We sang to her, we told her stories, we surrounded her with memories and cuddly toys. I will treasure that time forever.