The Waiting Game – Post Mortem Results

Yesterday marked 6 weeks from us taking Silver down to the chapel of rest at the RVI in Newcastle. We’d had five nights with her in the NICU in flats which are used for parents preparing to take their NICU baby home whilst having the nurses nearby in case any incident did occur. It was fantastic to be able to do this despite the fact we had always hoped the day we stayed in those flats was because we were bringing our little girl home. Because of the snow (the beast from the east) her post mortem was only able to take place on the Monday after she passed away the previous Wednesday due to staff unable to get to the hospital.

We had spoken with staff who had said we should be able to take Silver ourselves however the mortuary and chaplain weren’t too keen on us walking though the hospital carrying a dead baby. It could not only attract attention that would upset us but also could scare other people. So the compromise was that I could hold her wrapped in a blanket as I was wheeled in a wheelchair via the chaplain who took us via a part of the hospital where there wasn’t really any public. We took her at 10am, spent some time with her and reluctantly walked away when we felt the time was right. Of course no time is right to walk away from your child but we knew how important the results were and had known from the day we were told she was unwell during the pregnancy that we would have a post mortem.

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We’d already had a CVS genetic test during the pregnancy which never gave us any answers for why she was so unwell so despite going through such invasive testing we still had no answers. They did say that it still could be a genetic condition which simply couldn’t be picked up and they seemed to think this was the most likely cause. I am trying to take comfort knowing that our foetal medicine consultant, neonatal doctor and nurses had never seen a baby like Silver. They’ve seen these conditions before but not all in the same baby! So I am hoping if it is so rare that perhaps it means it is more likely to be a one off and not something we will ever go through again. I also try to take comfort from having Beau. Me and Fabian both have agreed if this had been our first baby we would be absolutely terrified of trying for another baby. A lot of the reasons we want the post mortem results is to know how best to proceed with trying for another baby. Whether we would be safe to simply try again or if we need IVF where it would then be genetically tested first to ensure it is healthy or not, or hopefully we will not be told that it is a high risk and we shouldn’t try at all! We are not opposed to adoption and probably will adopt too in the future but for now we would love another biological child.

I am certainly nervous to find out whether anything more could have been done and what exactly caused her death as the doctors are simply guessing. The thing I find the hardest to comprehend is Silver had been doing so well with her breathing that less that 12 hours before she took her turn for the worst we had discussed with the consultant on the ward round about transitioning her to less breathing support as she was doing so well and they’ve said cause of death was her lungs…! I have so many questions that keep going through my head. If her lungs were the problem despite her doing well on the ventilation she was on should she maybe have been put back on nitrogen support after her bowel operation just to help her during recovery? I wonder if her having surgery caused her to go downhill as I feel ever since the surgery she was always slightly paler than she was before but of course it was an important surgery. I wonder if I’d had the steroids in enough time for birth if that would have made her lungs a lot stronger and able to cope better. Honestly I have a million more questions and if I let myself think about it I drive myself crazy.

I keep getting this strange sensation of panic. Its the sort of feeling you would normally get if you knew something was going to hurt someone so you get an adrenaline rush and you run to save them. I keep feeling like I need to save her and as though my body doesn’t understand she’s gone. I keep panicking thinking I need to do more research, think of something else to save her, something else to try. The feeling of adrenaline in my chest makes me want to scream, I feel the flight or fight response and I’m ready to fight to protect her. Its completely exhausting me! I think I got so used to being told when I was pregnant that she was going to die and I adamantly refused to accept this that my mind has defaulted to that thinking and I keep forgetting the reality of the situation which most likely isn’t a healthy way to grieve.

I really wonder how we will feel once we get the results. People say waiting is the hard part and once that part is over then we will be able to start healing. The only worry I have is if it is bad news or changes how I feel about her passing that it could bring it all back up and actually make the grieving worse. I really want to be told she was simply too weak and her body couldn’t cope. I don’t want anyone to blame because I feel with my borderline personality disorder I am extremely likely to hold a grudge that will eat away at me and make me very ill, bitter and angry. I want to walk away from the experience with a heart full of love knowing I was very lucky to get to know such a special little girl and it simply wasn’t her turn to be on earth. I want to walk away knowing I have got to experience love in a way I never though possible and in fact she made our family and marriage so much stronger.

We were told by the doctor we would have results within 6 to 8 weeks so I am looking forward to hopefully finding peace soon. The doctor has very kindly volunteered to come deliver the results to us at our home, two hours away from Newcastle just so we didn’t have to go back there. I am sure over the next few weeks my anxiety will creep up as the time comes closer. After all, some parents who have still births or miscarriages may never have known their little one was unwell and so they wait the 6 to 8 weeks whereas we have been waiting almost 22 weeks for answers now.

I’m not sure I really have any advice for other parents for this phase of grief except by sharing how I’ve personally been coping. I’ve recently thrown myself into gardening as we bought our first home, a new build with no turfed back garden. So I have put a lot of effort into planning and cultivating my garden ready for planting some new plants and vegetables. I find being able to take care of something nurtures that need to mother, even if it is a plant! It makes me feel good being able to take care of something and help it grow to be healthy and strong. Unfortunately my best way of coping without Silver a lot of the time is to simply distract myself but recently cracks have started to show and I’m certainly feeling it more and more effecting me. I think there needs to be a balance between distraction and reflection. I find comfort in being able to talk about her and all the positive memories we have and try my best to focus on this. Of course sometimes its good to just have a cry and really experience the grief, it is horrible to do but usually relieves a bit of pressure that might have been weighing you down. It sounds strange but in my head I’ve come to the conclusion that the amount I cry for her reflects the amount I love her which is silly really but I guess crying reminds me she was real and comforts me to know how much I did love her and can’t cope living without her.

I hope this has been a good insight into the awful wait for post mortem results following the loss of a baby. There is nothing worse than “what if’s” and although the situation can’t be changed I cant wait to know “for sure’s” instead.

Until next time

Holly x