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.
