Post Mortem Results – 1 in 4 Chance?

When your baby passes away usually the last thing on your mind is having a post mortem. When we were first told Silver was unwell and all the testing came back as normal we came to the conclusion before she was born that if she ever passed away we needed answers. Of course we hoped we would never actually need to discuss a post mortem but not knowing what caused any of her health issues we knew we needed knowledge for the future and potential future pregnancies. We had already agreed the placenta would be tested after birth, something we are still awaiting results on.

Naturally we said straight away we were happy to go ahead with the post mortem in full. You actually have a lot of options of exactly what they do and if they keep any samples or organs or if you wish everything to be returned to the body. You also have the option of having a second burial/ cremation if you don’t wish to wait for organs which take longer to test before you commence with an initial funeral. Everything was well explained to us of exactly what we wished to be done and despite some people feeling uncomfortable with the idea of a post mortem it was explained to us as simply an operation. That’s exactly what it is though, the only difference is it is an operation after death and therefor doesn’t require sedation, pain relief or fluids etc.

We were happy to postpone the funeral until all organs were returned to her body and only allowed them to keep some miniscule samples which are stored on wax blocks. You may wonder why we allowed them to keep these, but as was explained by the neonatal consultant, you wouldn’t want your cells back from a biopsy and it is a similar scenario with these samples. I am not 100% sure but I think they either keep these samples indefinitely or they keep them for 25 years. The reason we did this was so if ever in the future an illness is discovered which happens to be similar to Silvers or new tests are developed they can then be retested and even if we didn’t get answers now we would get answers in the future potentially.

There were two main reasons we wanted the post mortem. Naturally we wanted to know why on earth Silver was so ill and what caused it. We wanted to know if it was something that was going to happen again or if it was a one-off fluke. We also wanted to know what actually caused her death as despite her being in intensive care and very sick she was actually improving and doing really well. The night before she passed away we had discussed changing her ventilation to a mask instead of tube down her throat later on in the week which meant considering how poor her lungs had developed she was doing absolutely fantastic. She always loved to show off, she managed to come off nitric gas within the first week of life and there were many times she did not require a high amount of ventilation support or oxygen. In fact, she even had “room air” quite a few times.

We were very fortunate to have a very empathetic consultant who offered to come down to our home in North Yorkshire rather than ask us to return to the hospital full of negative memories. I have to say at the time we agreed on this Silver had just passed away and I didn’t want to ever go back there but part of me wishes I could have done. I’m still tempted to go to Newcastle one day just to walk through those hospital walls and feel closer to Silver as she was alive. I have to say I am hoping and praying this next baby which is due late January is going to come in enough time that we could go to Newcastle for Silver’s birthday on the 12th Feb but I’m thinking this is looking unlikely. I feel so bad because it meant so much to me to be able to celebrate her birthday in her “home town”.

Okay I went a bit off topic there but yes, basically last week the lovely consultant neonatal doctor came to our home to bring us the post mortem report which he proceeded to go through with us explaining all the things we would have never understood. I’d like to go through it with you guys too, or at least I’ll try and explain most of what I can understand from looking back at it.

Firstly, they did an external examination. Most of this I already knew, for example it details where she had had her chest drain, her stoma and her IV line. There was bruising from blood being taken from her hands, bruising on her chest from the CPR, bruising from her ventilation support resting on her cheek and needle marks on her heel. The needle marks on her heel were from having her “gas” checked every few hours which I believe was to check how well the oxygen was saturating? I know one thing, she did not like having this done and despite having a tube in her mouth and being unable to vocally cry you could tell this made her cry, hence I never could watch this part.

One thing I did think was a rather odd remark was they stated she was pale. I mean I guess if her post mortem had been done sooner she might have had a little bit of colour but surely a deceased body is meant to look pale? I have to admit I did find this slightly humorous as I just thought it was so obvious for all deceased to look this way. There were however two things that did surprise me and I found to actually be very cute when he mentioned them. Apparently she had a small chin, something I never noticed but nevertheless a cute asset. It was also mentioned she had a dimple at the bas of her spine. She had always been on her back so I had never seen this but how cute! The doctor said this can run in families and its true, both me and Beau have the same dimple. This just warmed my heart, getting to know even more about her, more to fall in love with.

Moving onto internals lets talk about organs. That sounded a bit grotesque but I promise I’m not going into gory details. Silver was born at 32 weeks and 6 days so technically when she passed away she should have been measuring as a 35 week baby. Well her organs were all in keeping with a 29 to 30 week gestation baby, except her lungs and kidneys. Together the lungs should have weighed 41g and yet they weighed 27.6g, but apparently normally formed. Her heart showed to be worked fine and had all the correct connections etc.

The umbilical vessels were normal from where my placenta had been supporting her. Her stomach, bowels and appendix were displaced. Her stoma was apparently healthy (despite not working after several days of surgery). Liver, gallbladder, pancreas and spleen were all normal. Her adrenal glands were congested but apparently this was to be expected due to the sheer amount of stress she had been though. All her reproductive organs were normal too. The kidneys were both equally large and covered in multiple scattered cysts. I don’t honestly understand what the post mortem says about how the cysts were organized over her kidneys all I know is this was a main cause of why she then had no amniotic fluid which then led to her lungs being unable to develop.

So, what does all of this mean? Well genetics tests have all come back clear and no diagnosis has been given. They do not know what has caused Silvers illness. They did look into two kidney diseases – Autosomal Recessive Polycystic Kidney Disease (ARPKD) and Meckels Syndrome. She didn’t however have all the characteristics of either of these, one of which I believe usually involves extra digits and brain abnormalities but I can confirm Silver had ten perfect toes and ten perfect little fingers and obviously a completely normal brain despite her feisty attitude.

 

In theory you’d think this means no positive result for any known kidney disease would be a good thing. It points towards this incident being a fluke, right? Well I’d chose to believe this for the first ten weeks of my pregnancy and was coping pretty well until I got a phone call. I spoke with the geneticist from Newcastle who then mentioned it could be a fluke with a 1% chance or it could be that this is an unknown yet to be discovered disease. If this was the case and both me and Fabian were carriers I believe that would give us a 1 in 4 chance of this happening again.

Since then I have felt completely differently about this pregnancy and found bonding with the baby so much harder, because I am scared of going through the same pain. I don’t want to allow myself to get so badly hurt again but at the same time my motherly instinct means I’m already madly in love with this baby and can’t help it. It has made the scans even more difficult and I know these next five to seven weeks are going to be tough emotionally and mentally. I am trying to access as much mental health support as possible and prioritising mine and the baby’s wellbeing.

We have already told Newcastle if the same illness did occur again we will be delivering our baby with them again and making all the same choices. I do have a blog post coming soon about how amazing Newcastle were at looking after us and Silver as part of celebrating the NHS which is so true. I couldn’t think of a better place to go again if I needed to. Of course, my ideal plan is to be able to deliver locally and if possible have a VBAC but to be honest I just want a living healthy baby and don’t care how they get him or her out of me!

One thing we did get some answers on however is why the doctor believes she passed away that night. Despite having several pneumothoraxes (air leaking from the lungs into the chest cavity) previously and always recovering well, on this occasion he believes she simply didn’t have the reserve to bounce back as she had done before. Due to this and being so fragile with such small lungs she simply was unable to recover and it was clear no attempts to save her were working. She had medications to improve her blood pressure, CPR, blood etc. Thankfully this did give us some peace of mind to know nothing we did caused her death and by choosing to get her out for cuddles was a wise decision as she was likely to otherwise perish in the incubator alone whereas she passed peacefully in our arms.

 

In conclusion we still have many questions we still need answering, which unfortunately will not help us with this pregnancy. We have agreed to go see some kidney specialists in Newcastle on a research basis to do blood tests from me and Fabian to see if they can shed any light. I feel relieved in one way and slightly hopeful still for this to turn out to have been a one off but of course at the same time I am now navigating a pregnancy after loss with a sense of fear too. I feel we are still walking on a tightrope and don’t know yet what the future holds. Unfortunately, not all post mortems can give you the answers you need and I just hope one day we will know for sure what happened to our little girl. I feel it will give us a way to cope and move forward in a positive light, still carrying her tightly in our hearts. Nothing will change the past and that will always be difficult to come to terms with but we move forward feeling blessed for the time we had and lucky to be her parents.

Until next time,

Holly x

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