It’s very true that no parent can imagine the pain of losing your child or baby until it happens. It might sound like a cliché but your world, as you know it, really does come to an end.
Cause of death
It is hard enough when you are given a definitive cause for their death through a post mortem report but what happens if it is inconclusive and you have no answers?
Inquest for the truth
If this happens then the coroner may decide to launch an inquest to try to investigate why your child or baby died. What you don’t expect to happen is to have to wait over a year to get some answers from them. We have been waiting now for over 18 months without a death certificate. Our daughter still has her passport and ISA savings account because ironically in the eyes of the law she isn’t in fact officially dead.
We wish she was still alive because she’d be two and three quarter years old now!
Delays in answers
We were warned after she died by the coroner’s office that her inquest hearing might take at least a year to schedule because of the complexity of her death at Manchester Children’s Hospital. It was explained to us that criminal investigations have to take priority, which is understandable. We have only recently been given a date of this May for her inquest hearing, that will then be a whole 20 months after her death. It makes us wonder whether those involved with her care will even remember events and actions from that long ago?
In limbo
In the intervening 20 months of our lives we have been in a state of limbo awaiting answers. We have received various contradictory reports from the hospital. We also have had to chase access to many documents such as Violet’s medical records that should be turned around within 40 days of our request. Even these processes that were supposed to be relatively smooth have turned into nightmares. Involving me repeatedly chasing the Manchester NHS Trust. Even having to involve a local MP just to get access to something we have a legal right too. The constant battles we’ve had to endure would be enough, without having to deal with our grief and the unknown answers that loom large.
Rainbow baby number 1
In the 20-month void we also became pregnant with our rainbow baby Arthur and unfortunately lost him 6 months ago at 22 weeks gestation. We had a full post mortem done on him too, hoping again for some answers. We were told he had some genetic problems so we were referred to see the geneticists at St Mary’s Hospital. Who are some of the best in the world. This filled us with confidence that they would find the problematic gene so that maybe we could opt for IVF genetic selection or get a pregnancy screened earlier than 20 weeks in the future. We were told this process would take maybe 8 or 9 months in order to be able to identify a particular gene or group of genes that caused his problems.
We had a letter a few days ago to say they have checked for all the obvious gene defects but they can’t find anything obvious. It must be something super rare or undetectable by today’s technology.
No reason why
The not knowing why both our babies died is almost as hard as them dying. I know the answers won’t bring them back but I think it would help my brain to make sense of things. The practical part of me would want to be able to put new procedures or tests (if possible) in place to prevent reoccurrence in the future.
Has anyone else gone through something similar? I’d be interested to know.
Sending lots of love & hoping for answers soon.
Sarah x
Hi Sarah
We lost our son Ben in September 2016, he was 11 years old and our only child. Ben had difficulties at birth that we thought was a one off and after 3 weeks in neonatal we came home thinking everything was ok. Over his first year a number of things cropped up to indicate all was not well – hearing loss, feeding problems, low muscle tone and kidney problems. Because there were a number of difficulties they felt it was somehow all connected and suspected mitochondrial disease. They did lumbar puncture, muscle biopsy, skin biopsy and kidney biopsy which again indicated a problem with the mitochondria but nothing definitive.
It was to be 9 years before we got a definite genetic diagnosis of a super rare gene alteration that me and my husband both carry, which causes mitochondrial disease. This meant we had a 1 in 4 chance of any children being affected – and Ben was. Over the 9 undiagnosed years There were times when they thought they’d found things, then when they thought it was all random, it was a real rollercoaster.
Ben progressed well despite many difficulties and he was amazing and did so much more than we thought he might be able to. However less than a year after we got the confirmation, his health took a downward turn when a heart condition was added to his existing problems , it was all to much and 18 months later after putting up a fight, he passed away peacefully at home.
It took 9 years to get the diagnosis, the hospital and the specialist mitochondrial centre kept going back to his samples when they had new things to test against or new equipment/processes. We were given varying statistics over the years about how likely it was to happen again if we had more children – but it’s basically all a guess for them until they have the specific genetic cause.
The funding into mitochondrial research raised by the Lily Foundation was a huge help in developing the ability to make diagnosis with whole genome sequencing. Genetics is a Hugely complicated area where research is so needed, but it’s also developing constantly and finding diagnosis quicker.
For us, having the diagnosis was a significant point, and did give us answers and options as far as having more children (but we had already decided not to). But on another hand, it didn’t really change anything about Ben, how we cared for him, or in the end the outcome we had.
Being undiagnosed/ a SWAN is hard but all I can say is if you are desperate for answers, keep on at the team to investigate- have you had while genome sequencing or are you part of the huge genome project? Might be worth asking about?? After waiting so long we kind of gave up hope of every having answers and then it suddenly came from nowhere.
So sorry that this has affected you twice, I totally understand that you want the answers having been through what you have, and I truly hope that one day you get them for your peace of mind.
Best wishes Xxx
Hi Helen
So sorry to hear about Ben such a sad story and traumatic for you all over the years too. The genetics team apparently tested for 180 different genetic markers they thought might have been the cause but either they aren’t defective or the technology isn’t there yet for them to be able to see the subtle error. They have suggested I join the genome project and we have just signed up to this in the hope we get answers eventually that might benefit other family members in the future too.
We’re hoping to at least get some answers from the coroner’s inquest about our daughter and why she died as that is a mystery as her genetic issue (a heart defect) was deemed a 100% fix from her post mortem.
Sending lots of love your way and thank you for sharing your story.
Best wishes
Sarah xx