This weekend was fathers day and for us a positive/confusing weekend!
On Friday we received the MRI results back, the baby was very wiggly so the images weren’t the best. But the had scanned the brain twice and in both of these they saw some veins on the brain. They can’t rule out these being small bleeds on the brain but don’t think it is this.
The not knowing is terrifying I am so worried about brain damage for our little one. The MRI also looked like the lesion was at l4 which is positive, but we can’t take this as bible as the baby was moving so much it is better to take the scans diagnosis of l2.
They told us they were looking to try and find another date but can’t guarentee it. We are still focusing on Tuesday but hoping another date later will be confirmed over the weekend.
We had an amazing family weekend of spoiling Daddy and showing him how much we love him. He is truly the best father and husband in our universes and we are so lucky to have him. He is our ultimate support and quite frankly the only thing getting me through this right now. Could not love him more!
We’ve pretty much agreed we want the surgery. But haven’t said it out loud. Probably in fear of making a decision or the wrong decision.
Today we got to meet the amazing FMU specialist sonographer. He treats his scanning as if it was art! Everything is so precise and he is soooo passionate. He immediately made you feel relaxed. You were definitely in safe hands and he knew what he was doing.
We then had a consultation with the drs and an FMU midwife. Here they ran through the scan and told us the lesion was higher than we thought or had hoped for. At L2, there is an 80% chance they won’t walk. If it was at L4 there was a 20% chance (I think although my brain is all over the place so I might be changing facts).
Although we knew there was a high chance they wouldn’t be able to walk we always kept hope. Thinking that at some point our luck might change, they might suddenly tell us it’s not as bad or something might actually go in our favour.
We asked the question around termination and how many people they see decide not to go ahead. They estimated 20%, which is hugely improved on the initial diagnosis, but to be expected. If people go to the effort of investigating they tend to be more invested and less likely to terminate.
However I still couldn’t keep myself from asking the question on would this be fairer? I was so scared of making the wrong choice, a choice that I couldn’t manage. This wasn’t a choice that was going to affect us in the short term, it was a decision that was going to affect our entire lives for the rest of our lives, the twins lives throughout their childhood and somewhat into adulthood and the unborn babies live long past us being around to look after them as every Mother wants to.
They talked through the diagnosis and all our options again, in great detail. Although we already knew most of what they were telling us, it was good to talk through it logically and with the facts laid out in front of us.
We told them about our concerns for doing the op before 24 weeks, ultimately we wanted to be able to register our babies birth if the worse came to the worse, death. We had already had the discussion around if we were to terminate not being sure if we could do it earlier than 24 weeks, wanting to be able to have the pregnancy feel like it was legitimate. Which sounds horrendous as ultimately surely that was prolonging the babies life and that would be even worse? Killing a child that could have lived?
They said we would keep going as if we were operating on Tuesday but look to see if there were any other dates available later on. But we would need to make a decision if we wanted to operate by the end of the week.
We felt massively pressurised and confused. At this point it hit my husband that I would be risking my life. If everything went wrong he could end up without me or the baby and our twins without a mum. To say this was an emotional realisation is an understatement so we went for lunch where lots of beer (by him) and expensive food was consumed. Being in public meant forced talking without the ability to so openly cry.
Luckily we can talk without too many words. I know my husband inside out and he can see right through me. I could see how much he was hurting and just wanted to take the pain away. I hated myself for not being able to have looked after the baby enough and protect it from things like this. This was all my fault.
Several times throughout this process I had some horrible thoughts, some evil poison seeping into my mind. I constantly blamed myself and definitely thought it would be better for everyone if I were to go away somewhere. The thought of a car accident crossed my mind on several occasions. If I took myself and the baby out of the equation then no one would have to continue this awful journey. I was at my lowest low, and wasn’t sure how I could get out of this slump.
My husband was my savior. The only person who could make me see there was a slight light at the end of the tunnel and stop me from doing something really, really stupid.
We arrived 20 mins early and wanted to do our usual routine of going to get a Costa so we felt a little more relaxed.
The wait was unbearable, it felt like everything was heightened. So I got my work out and started to distract myself.
We were shown around the areas we needed to know. Where the FMU was and we would need to go tomorrow and where the MRI would take place. As well as having another chat about everything with us. We felt instantly relaxed. Although running around the hospital, she was so kind and made me feel better about it all. Without trying!
The dr had a look at my 12 week scan images and said she could see the Spina Bifida at that point. But not everyone would. This made me sad, I wondered if I had known then would I have handled things differently? This also reinforced my opinion that the sonographers need more training. Yes it would take a while and be costly, but if specialists can pick it up at 12 weeks, then how on earth can sonographers not pick it up at 20 weeks?
The other shocker was that the surgery HAD to be at 23 weeks, before the baby was at viable birth stage, before it would be registered if things went wrong. This was scary.
We had some lunch in the hospital cafe (my first taste of delicious hospital food! My husband had a chilli, the plate was huge! I had a jacket potato and to be fair it wasn’t bad, the sandwiches looked far from desirable and the other veggie food really didn’t appeal. Then we went up for the MRI, my husband couldn’t stay with me but I was positive it was going to be fine and was in a calm space. It lasted an hour and I fell asleep, with all the noise and banging from the machines I still managed to fall asleep 🤦♀
Bring on tomorrow with the wider team’s consultation and scan!
In a place of emotional torment and conflict we tried to maintain as much normality as we could. Playing with the twins on a daily basis with loads of cuddles was medicinal. It really kept us going. As did simple dinners. Food that we both loved but wasn’t effort to make.
This kept us sane until we went to bed and had time to think about it all again. Which I dreaded but knew was a necessity. We couldn’t bury our heads in the sand with this one as much as we wanted to.
We finally had our MRI booked in. So would be going to London on Monday for the MRI and to meet the lady organising everything. We then had an ultrasound and consultation booked in for the following day again at UCLH.
A plan of action was massively helping us get through this.
The scan at 20 weeks told us there was an issue with the brain, she ultimately thought our baby didn’t have part of his brain and was brain dead.
The spinal issues weren’t even picked up! I was furious. There is some serious training needed here. I could see it when shown on the scan, how didn’t she?! The specialist. Missing the sack on the spine and the defect just seems inexcusable.
She had even showed us the spine on the scan and said how amazing it is that you can see all of the vertebrae, and that it was “perfect”.
How could she have gotten it so wrong?! When I brought this up with the FMU specialist at the local hospital I was told the scanner was one of their more experienced members. They didn’t really believe that she had told me the spine was perfect, I think because it was so obvious to them that it wasn’t.
Scanners are in some serious need of having some training.
We continued to chase the referral to UCLH and left voicemails and texts on the local FMU’s phone. No one came back to us and we were really keen to get over to London to find out more, facts, our options, their opinion.
On the Wednesday we had three phone calls, one from the local hospital, oblivious to the fact we have been chasing the referral. Apparently the midwife we had seen wasn’t in and they weren’t able to help with the referral, until I said ok but we were told it would be this week so waiting until tomorrow for a midwife to call us back just to get booked in probably isn’t quick enough, we’d already waited since the Friday before. Thankfully she then took it upon herself to ring the UCLH herself to look into it for me.
However she did call to tell us the fast results came back clear so we just needed to wait for the two week results from the amnio to confirm and ensure we are eligible for surgery.
The second call was from my community midwife. She was extremely empathetic, trying to help us as much as she could… I just burst into tears. This is not fair, we’ve had our fair share of s@*$ thrown at us, we weren’t due another batch. Why on earth did we deserve this? Why did our baby (more importantly) deserve this?! If there is a God he has an evil sense of humour as this is not funny. The midwife wasn’t experienced with what we were going through and didn’t really know much about it, but was someone who I felt cared and showed the right level of empathy. She didn’t just apologise, she listened.
The third call was the call we had been waiting for. UCLH called to book in our referral and needed a whole bunch of questions about my medical history answering. By this point I was over the emotional roller-coaster and back on the rational facing facts track. I sent over all of my scan information as the local hospital hadn’t shared this as well as running through my previous medical history: 1 ectopic leaving me with left tube removed 1 birth with twins (ivf) where I hemorrhaged 4.5l of blood and had 10 units. Twins were born at 36+5, so yes prem but pretty good going for twins.
The last point of prematurity was their main point of concern. She booked me in for a consultation on the following Tuesday and said she would email me regarding getting the mri booked in.
More waiting, but I finally felt like something was happening.
The amniotic test was to see if were are any other chromosome issues or genetic issues that would prevent the surgery going ahead. As they would deem the benefit not worth the risk if this was the case. I will receive these results in two weeks but will have the UCLH tests meanwhile too to check severity and if they would be willing to operate. With all of this I am at a massively increased risk of miscarriage also, so this could be taken out of our hands and we could still end up without a baby even if we wanted to go through with all the operations.
We bad been in hospital every day since the previous Thursday (by this point it was the following Tuesday) being poked and prodded with varying levels of information thrown at us.
So to say it’s been emotional is an understatement. But hey it’s me, nothings ever straight forward! Part of us wanted the baby to make the choice for us, as horrible as it sounds. We were still unsure of whether we could do this. Was it fair to be bringing a child into the world who we knew were going to face massive mountains to conquer in it’s life time. Even if selfishly we wanted this baby more than anything, was our love enough?
We showed up to our chat with the specialist consultant at our local hospital to discuss our options and the amniocentis was already waiting.
Our consultant spoke to us about the options we had again and the route we wanted to take. Before taking us into her room with another dr where she needed to repeat the scan.
We had our list of 20 questions waiting and fired them at her, happy to answer every one of them honestly thankfully! Then agreed we want to talk to the UCLH so wanted the amnio to get the ball rolling.
Everything seemed to be getting very real now. All that was to do was to wait for the fast test results from the amnio to come back and then wait the two weeks for the more detailed results. As well as waiting for our UCLH referral.
They also took a urine sample as I was so nervous I was peeing constantly! 🙈
We had the weekend to come to terms with the diagnosis and decide what we wanted to do.
We only told my parents as they were looking after our twins whilst I was having the scan. But wanted to keep everything to ourselves until we had gotten our heads around it all.
Despite how we were feeling, we decided some level of normality would be a good thing and had bought tickets to see Michael Bublé for Christmas presents to each other. We decided to go and try to enjoy a night of normal, not constant thinking about the diagnosis but enjoying ourselves.
This was the best night we have had together in a very long time! Michael was incredible, made us sing our hearts out and laugh our heads off before crying along to some of his songs striking a cord.
Michael was our saviour that weekend.
He gave us the ability to let go, see how strong our relationship is and the love that we have for each other and our family.
That weekend we talked about everything. We tried to only look at the research from the UCLH and not google scare ourselves. We wrote a list of 20+ questions we had for the consultant and armed ourselves for Monday’s appointment.
We decided that we wanted to go and see the drs at UCLH regardless as we aren’t able to make a decision without being 100% informed and armed with all the research/knowledge.
The morning of our fetal medicine consultant appointment was the first time I managed to capture our baby kicking on camera. The first time we had really seen it as well as feeling it.
Mixed emotions followed. Our baby was brain dead, how was this possible?! At the consultants appointment we arrived crazy early, got a costa and had an early bird breakfast to try and gain some level of control/calm. We went into the appointment expecting the worst but hoping it was all a mistake and the scanner had gotten it wrong – our baby was fine.
The consultant scanned the brain and immediately looked at the spine. We looked at each other -the spine was “perfect” or so we were told yesterday. Why is she looking there rather than the missing piece of the brain?
It turns out the babies cerebellum was there it was just a banana shape and pushed down, this was being caused by spina bifida. With a lesion in the lumbar section of the spine causing a sack on the babies back where the fluid and cords weren’t being contained within the spine. Basically the vertebrae hadn’t closed properly on that section of the spine meaning the cord was exposed. It also meant the fluid wasn’t flowing from the brain to the spine properly causing the ventricles in the brain to increase with fluid, the cerebellum to be pushed down and into the banana shape, as well as a lemon shaped head from the fluid.
Our baby had spina bifida. It is un-fixable, the baby will be in a wheelchair, could have issues with it’s brain, would need a catheter, could have issues with it’s bowels and would have issues with fertility/sexual performance. There was a lot to take in.
However there was a new surgery that had been taking place at the University College London Hospital since October that we should be eligible for. They would perform surgery on the baby inside the womb at 25 weeks to put the cord back in the spine and cover it over with muscle and skin. This wouldn’t rectify the damage already cause but would prevent further damage. Reduce the potential need for a shunt. Increase potential mobility.
We had three options: 1. Prenatal surgery 2. Postnatal surgery 3. Termination
Although they had given us three options, they told us that they strongly believed we were eligible for surgery, unless the amniocentesis or the MRI that we would have to undergo showed up other issues with the baby. This to us eliminated one of the options, postnatal surgery.
Having discussed a little bit immediately afterwards, we felt that if the drs told us that we couldn’t have the surgery and there was anything else wrong with the baby that it would not be fair on the baby. We were so worried about acting selfishly because we wanted this baby so much.
We also have 16 month old twins who would be massively impacted by any decision we made. As the consultant said, we really needed to think on the impact this was going to have on their lives, not just the quality of life for the baby being significantly reduced but potentially reducing the quality of life for the twins.
Everything felt very negative. I felt completely pulled between wanting to do what is best for the baby I was growing, to wanting to do what is best for us as a family.
This was the moment we found out there may be issues with our baby.
Our 20 week scan went as everyone else might expect. We were so excited to be finding out if we were having a little boy or a little girl. We didn’t actually think about all the other measurements and checks that would be done too much.
The night before the scan I asked my husband “are you worried?” He said he was just excited, and I thought I should try and let some of my anxiety go. I always get scared before scans due to previously suffering an ectopic pregnancy at 8 weeks.
This has led me to think that every time I have a scan they are going to give me some sort of bad news. But this time my anxiety wasn’t unfounded.
The scanner did all of the measurements and then went to between the legs…the moment we had been waiting for. I saw the sex of the baby before the scanner! It’s a boy!!!!
They then said the spine looked great and showed us all the amazing detail you could see with the scan on the spine, as well as with the skull and eyes…Really freaky!
After telling us that the spine was great, she said that she was having difficulty scanning the head and getting the measurements, so I offered to go to the toilet believing that it was just because he was in the wrong position. When I came back she still said she wasn’t able to get the measurements she needed.
She then scared the living daylights out of us.
The scanner couldn’t find the cerebellum and all she could say was sorry. No explanation, no understanding of what this could mean, just confusing sympathy for something… but she couldn’t tell us what.
“It is the part that affects co-ordination, you never know many people might be living without their cerebellum but we don’t know as they haven’t had reason to have a scan and weren’t scanned as a baby.” What a load of nonsense.
We were taken into a separate room and had yet another equally annoying, trying to sympathise but no idea what for midwife enter.
We were immediately referred to the fetal medicine consultant, who happened to be on holiday. But they knew it was something big and had to get us in within the next three days to see someone.
We were sent home that day confused, angry and unsure of our baby’s future. Believing them to be brain dead.
When they called to confirm an appointment with the fetal medicine consultant, she had decided it was big enough to cancel her holiday and come in at 8am the next day to see us.
What followed was a sleepless night full of tears.
Spina Bifida Baby 