All those teenage years desperate not to get pregnant, and now when you want to it seems impossible!
Three years trying to conceive, after 2 years we got referred to a Fertility Specialist, typically whilst waiting for the appointment we conceived naturally – I guess we felt the pressure had been removed. Unfortunately 7 weeks in I began bleeding and miscarriage was confirmed at 7 1/2 weeks – back to the drawing board! A further year of constant ovulation tests and disappointing pregnancy tests, we got re-refered – multiple tests later and once again whilst waiting for our further follow up appointment…..I discovered I was 4 weeks pregnant! We just clearly don’t work well under pressure!
Our luck was finally in and we told everyone our news after our 12 week scan, I was growing and getting bigger and the excitement from everyone was amazing; we finally got our happy ending! However, Suddenly though at our 20 week anomaly scan the mood totally changed; the sonographer needed a second opinion, as they thought something wasn’t quite right with the baby’s brain….second lady entered and yep, the ventricles in the brain were a little enlarged and they thought they could see an abnormality in the spine, the word Spina Bifiida was mentioned but nobody knew what this actually meant. We had to see a consultant to confirm, but typically we were going on holiday the following day so had a long fortnight wait. We waited in limbo, not knowing what to do, everyone waiting to hear the result from our “gender scan” – forgetting it isn’t a gender scan, it’s a massive scan looking for major issues, which incidentally can also detect gender!
At the consultant appointment the doctor confirmed our baby has Spina Bifiida….which came as a shock but we’d had time to get our head round this possibility, however what we had not prepared ourselves for was the bluntness and totally negativity towards this diagnosis. The consultant said we had 3 options….1. Termination (this was her opening line!!!! It was almost like she was on commission for them!) and she then proceeded to describing the exact details of how this is done!! Remember, this was Her opening line!!!! 2. Carry on with the pregnancy, but our baby would probably be paralysed and have no mental capacity; or 3. She casually mentioned an operation she’s heard of in utero to repair the lesion, but she knew no more on that. Whilst sitting there numb she told us most people would terminate, and would we like to go for a cup of tea and decide!!!! As if we could determine our precious, long for baby’s life over a cup of tea!!!!! Thankfully one of the nurses was beyond kind and told us to come back in a few days and see someone else. For those 2 days we felt numb, it was like we weren’t in our own body, just a shell of a person, watching from a far as this family crumbles apart. How could we make such a decision?! Never knowing what is for the best?! We had been so desperate for this baby; I’d felt her move, we’d seen her little face?!
We researched a lot in that time, and read up on the operation newly available at UCLH. An appointment was arranged for us to go up to London to meet with the pioneering professor from Belgium to find out more; even knowing that made us feel a little better as we knew whatever our decision it would have been made in the most informed way and through exploring all avenues…….not just an impulse decision over a cup of tea!!!! So a week later up we went to London, and what a humbling experience it was….the top doctors and specialists there to help us – to help our ting baby! Numerous ultrasounds, 2 MRIs and an amniocentesis later, we were one step away from operation approval. However The MRI detected something further with the brain which they weren’t sure would effect the possibility of surgery; this had to be run past 4 further specialists in Belgium for their opinion. However finally at 8pm on Friday 2nd November we got the go ahead…..me and our baby would be operated on Tuesday morning! Who knew the prospect of surgery would have such a calming effect – it was just knowing that we were doing all we could to help our baby. The surgery has to be done by 26 weeks, so from confirmed diagnosis at 22 weeks, the process was fast moving, and surgery was arranged for 24+5 weeks.
We went up to UCLH on the Monday for surgery early Tuesday morning, so the weekend was a whirlwind. The surgery itself is pioneering and truly amazing. It’s basically a caesarean, but the baby remains in the uterus; so the uterus is opened enough to expose the baby’s bottom and the area on the back where the lesion is, the spinal cord is then put back into the correct place inside, the baby’s back is sewn back up and artificial fluid is put in to the uterus to replace those lost, then the mum is sewn up with an almost hip to hip incision. I was then taken back to the ward to recover. After surgery you are on bed rest, pretty much until delivery – which would be at 37 weeks by caesarean. After a week I was allowed to go home, I was battered and bruised but at the same time strangled had never felt more powerful! I had just done all I could to help our baby, the operation does not fix any damage already caused to the nerve endings however it does now stop any further damage being caused! I had put her in the best position for mobility, continence etc.
The biggest risk of Fetal Surgery repair is the risk of prematurity, it is a huge risk, with the average baby arriving at 34 weeks due to membrane rupture. Due to the incision in the uterus, being not where a caesarean would normally be, the uterus is weakened and normal delivery is not allowed – , so no lifting, over doing it really anything is not allowed – with this being contractions as well! I rested and took it easy, however on the morning of the 4th December, when I was 28+5, I awoke to what I soon discovered was contractions, rushed over to our local hospital who confirmed they indeed were contractions but from a test they done, they confirmed Labour wasn’t going to start within the next fortnight!!! Apparently this test is 99% accurate…..me and my husband instantly knew we would be that 1%…..and yes we were! Come the afternoon contractions were getting worse, and at 5pm I noticed I was now bleeding…..the speed in which I was rushed to the Labour ward was amazing, and how they remained so calm still amazes me. It was discovered I was now 1cm dilated so an emergency caesarean was undertaken and Martha Hope arrived in the world st 6.20pm weighing 2lb 11oz. She was Instantly rushed off to NICU, and I was allowed to meet her the following morning once my epidural had worn off. We were euphoric, but in total shock! Martha was the smallest but mightiest baby I have ever met; she came out legs kicking all over the place – a true delight to see considering we were told at the dreadful first appointment that she’d be paralysed. She continued to go from strength to strength and after 7 days she was moved to Special Care where she remained for 7.5 weeks – all she needed to do was grow and get chubby!
She is the most amazing person I have ever met, and feel beyond privileged to be her mummy. She currently has full movement and sensation in her legs (with the most powerful of kicks) she has currently needed no intervention with shunts and currently has a normal bladder with no retention of urine (a common issue with Spina Bifida where catheterising is required). Of course she may have challenges to overcome as she develops further, but The doctors feel these may be minimal if so – she is just amazing! And this is the baby that we were told to terminate!!!!!! She has Spina Bifida, but Spina Bifida doesn’t have her!
Martha Hope is the true definition of Girl Power!!!