Emily

I havent been posted any updates for a while but I thought incase people were wondering I should explain some things.....

We drove to our anomaly scan, 21 weeks pregnant with some excitement, looking back we were quite blasé  – I guess we had finally got through the big hurdles, we’d cheered about being half way there, we’d convinced ourselves we were starting to get closure from the loss of our first child. We had even begun to sort through and tidy the nursery in readiness for our second most wanted child. Clothes unpacked and folded into neat piles in drawers, even hung on hangers.

We were both fools. To think we would be getting an easy ride this time.

The sonographer measured head limbs and spine and muttered under her breath about an awkward position, I guess I thought this was what was stopping her from focussing on an image for my scan picture for which I had dutifully paid my money and got my stamps. She decided that she would get another sonograoher to take a look because the position meant that looking at the heart was tricky, she could see all four chambers where they should be but not clearly enough. On second inspection there was more confusion, which started to lead to a little anxiety on our behalf while the sonographers agreed that they weren't the experts so they would get the consultant to take a look. We were ushered out of the room back into the waiting room and waited for an age before being escorted back into a larger darkened scan room.

The consultant was quiet as he gently manouvered the scanner tip over my tummy settling firmly  in one area. I felt silent tears filling my eyes and rolling donward as Dan tentatively touched my hand, ever optomistic and  hopeful, he would be thinking, 'It will be ok.'

The silent way I was asked to get dressed and watched carefully by the nurse indicated that this was not the case. We were then taken into a counselling room – which can only mean one thing. Our baby was poorly – very poorly, and we may never get to meet her after all.  We were left alone, to ‘take a minute’ I believe, I became hysterical apparently, looking at my eyes broken into a million red dark cappilliaries would somehow prove this. Although until this moment even after losing my first baby girl, I hadn’t really truly understood the true meaning of a broken heart, and yet here we were with a broken hearted baby and equally devastated parents – again. Eventually the consulant returned to the room. The conclusion albeit, not confirmation was that she had a heart anomaly, hypo plastic heart sydrome where one of the heart was underdeveloped. This rare congentital heart defect occurs in 2 out of 10,000 babies - oh, so just a bit more common that the genetic Zellwegger's we had escaped. Lucky us.

There was no way of saying at this point without a reffereal to the specialist peadeatric cardiologist how severe or indeed fatal the prognosis would be. 

Faced with more questions and equally tough decisions and total uncertainty - we returned home to spend a week waiting, as soul-less zombies, prior to our appointment with the fetal medicine unit.

May 2012

We had waited patiently for a week before heading to the Liverpool Women’s Hospital for further diagnosis on our baby’s heart. After an hour of anxious waiting room we were ushered into a dark scan room, same as we had had our CVS early in the year. After 20minutes midwife and Doctor arrived and began scanning. Yet again baby was in an awkward place, this went on for some time with light mutterings about transposition, pulmonary arteries and lack of flow.

After a short recess a fizzy drink and a walk to get the baby moving there was more scanning and eventually a return to a counseling room for feedback.

The baby didn’t quite have a hypo plastic heart, instead it was more uni-ventricular, with both the pulmonary artery and aorta coming out on it, and the left ventricle was almost invisible. There was crowding around the inlet making the blood flow slow and if this were to get worse it would stop.

The diagnosis suggested our options of a three part surgery called the Norwood Procedure, part one during the first week of life where the heart is cut open and shunts are put in to keep the blood supply flowing, part 2 at 5-6 months of age – each of these stages had a 50-50 success rate – past 5 the third part of the operation would be more successful but there would never be a guarantee that they wouldn’t need a transplant at some point and the would have a time bomb ticking over their head. The choice was ours of course. But we needed more time and more information. They arranged for us to go back for a further scan with the Pediatric Cardiovascular Surgeon.

A week later the scan revealed even more complex points, on second viewing the heart was on the wrong side of the body, indicating no spleen and a possible contorted bladder, all these things added to more complications and without knowing until birth there could be other chromosomal factors here. The advice was either termination of the pregnancy or regular scans to ensure baby didn’t die before birth and then after birth palliative care but no cure.

If you have read my story then you will know, there is nothing I wouldn’t do for my child and with Ellie we fought for as long as we could and she could to keep her with us, She probably should have died a hundred times if it wasn’t for us watching over her like a hawk. But what did those final three months do to us? They broke us into tiny pieces that have been brushed under carpets and blown out of windows and our home is now bereft, our hearts are crushed and broken, our marriage has been dangling over a cliff. 

22/5/12

Our baby died today. A final inspection of our baby girl’s heart it showed that it had failed and we had to say goodbye.

She hasn’t left me yet but will in the next 48 hours    I had tortured myself all day with questions to the midwife. Will this be like a real labour, what pain should I expect? What if it comes on early? What pain relief can I have and how soon? What happens to baby one she’s born? Where does she go? How long can we hold her? Do we need to dress her? And then we would be given photographs and hand prints if we wanted them before she would go to the mortuary.

I was crying with each answer that was rebounded at me.  After reaching a more hysterical tone I decided to end the phone call.

I think I was still in disbelief that here I was again talking about funeral arrangements for another child, two daughters lost within two years of each other. This has to be a sick joke. NO??WHY???? I haven’t shouted because I know it won’t make any sense but I am angry and broken inside knowing that YET AGAIN happiness has bypassed me.

We entered to nursery, which has been re-tided, clothes rehung and prepped in time for our new arrival – all we were doing was adding another ghost into that room. Carefully selecting a few items for our baby girl who we had now decided to name Emily Grace, a snuggly toy, a soft yellow weaved blanket and the smallest possible baby grow that had been Ellie’s in pink. Each item was tearing me in pieces. It was losing Ellie all over again and losing the promise of a happy family and our new start.

That evening I was simply bereft, I couldn’t look at myself   in   the mirror, to see that bump which had been moving and alive but was now just still. I held it while I or tossed and turned through broken sleep. I had bad dreams. I cried. I felt so sad. The following day I found   the baggiest clothes, I hid from people, I didn’t want to talk about it, holding the utter desperation in my heart that this much wanted child would never come to fruition. Sad that she had befallen a fate somehow worse that our darling Ellie.

I was awake early on the Thursday morning – sick with anxiety and some fear. I cried on waking, I cried at breakfast. How I ate breakfast I wasn’t sure, other than knowing I’d need my strength, the midwife had told me to pack for a normal labour and expect a normal labour.

At the hospital we arrived promptly at the delivery suite at 9am, and were shown through to a set of rooms almost like a corridor office with two delivery suites, one ‘lounge’ and a a double bedroom. This was the Lady Cholmondeley Suite I had heard about – where you go when your baby dies. On first impression it wasn’t as grand as it’s name might suggest, but the double bed looked like somewhere I just wanted to crawl into and hide forever.

After a brief chat with the solemn consultant who explained everything I’d been explained already several times by Liverpool and my midwife, expect normal labour and to be here til the evening.

Many tissues later and lots of uncomfortable waiting, it was 11.20am and the midwife finally arranged for me to ‘start’, I was given two pessarries and then allowed some paracetamol. I’d requested as much pain relief as humanley possible but all around me had suggested I go with the flow and what was really needed. I wasn’t here   for a   medal this time – I just wanted it over.

I felt my first rumblings at about 11.45, gentle back ache at first then low twinges in the abdomen, these were regular  twinges as I kept an eye on the clock, maybe in and out every ten minutes or so. I was starting to feel rough, squirming around on my chair, it was getting to one o’clock and I requested some codine which wasn’t due until quarter past.

The pain started faster and harder now, I tried to eat but was immediately sick. I dragged myself into the bedroom and slipped into a nightie. Next minute I was doubled up in pain – The nurses seemed surprised at how quickly the drugs had taken effect and hurried to prescribe my next requested drug. The diamorphine was injected straight into my leg, a little too late,  I was lay curled on my side when I felt pressure to push and they moved me onto my back as I felt the waters come, a huge relief from the pain, then they passed me gas and air and after ten short drags of breath on the pipe and then she was delivered and she was gone. 

Emily was brought back in to us wrapped in a hospital blanket that was by in large heavier than she could ever be, weighing a tiny 1.4llbs it was like holding a kitten. I thought I would be frightened but I loved her every inch. I wanted to examine her, like a bitch with her pups, and lifted the blanket to look at the small perfect hands with long fingers curled around each other, her slim tummy and thin legs and then the perfect cream feet at the end, long and slender. Did she look like Ellie? Not the same obvious features, she was more normal of course, but yes, she had a look of Ellie, but just so, so tiny. 

I didn’t want to see her again after this precious time – I was still haunted by how quickly Ellie had changed colour and become almost jaundiced. Thankfully the drugs made me sleep, I drifted in and out of consciousness and continued to be un-pleasurably sick. I was given tablets to prevent my milk coming in but I was sick, so would have to endure that over the weekend. We left the hospital in a daze after speaking with the inept counseller who although apologized for our loss commented, ‘It doesn’t seem that long since I last saw you both’, - thanks for that reminder.

My mother accompanied me to the registry where a still-birth certificate was issued. Such a sad day. My mother was now the proud grandparent of two deceased girls. My heart ached. My body ached for the baby I should still be carrying.

The funeral came round quickly, there hadn’t been much to sort out, the hospital made most arrangements but we had to go into the funeral directors and choose caskets from brochures again. Then flowers. We arranged to meet the director at the crematorium, it was eerie, empty as the doors were opened up to reveal a small wicker cat basket with a spray of white lillies. After a small committal by the director he left us standing lost holding hands. I cried. Is that an understatement? Probably.