semilobar holoprosencephaly

Our love for Shalome

by Northern Life

When expectant mum Emma Harwood and husband Colin were told their new baby would be born with a severe brain abnormality, they were given the option of terminating the pregnancy. But the couple, who have recently moved to Huddersfield, agreed the baby was wanted, come what may, and Emma gave birth to daughter Shalome, a name which means peace. They will face difficulties during Shalome’s limited lifespan, but they have the support of Forget me Not Children’s Hospice in Huddersfield. Here are some selected extracts from her personal journal…

Our dream? To become professionals in our field (engineering/teaching) and hit africa or the middle East doing work, community and juggling our growing family hand in hand. Like most couples we have an inbuilt drive to fulfil our life’s mission. After a lot of prep and fun along the way we are nearly there, on a three year count-us-down. But that is about to be tested to the hilt.

The Ultrasound Scans (prognosis one)

Our daughter Faith has just turned one and we are expecting our second child; every bit a miracle as the first (especially when we were told that I was infertile!) The awaited 20-week scan is today, bringing on the glimpse of our baby and nailing the due date! We breeze over the fact it’s actually an anomaly scan. The sonographer’s silence is deafening! She can’t locate the whole brain and sends me on an hour’s brisk walk. Alas, still no joy. We return the next day when a specialist conducts the same tests. He explains that the brain has only formed in one solid mass. Bomb dropped!

‘Alobar holoprosencephaly’ is the diagnosis after a swarm of doctors use specialist equipment to confirm the suspicions. To de-jargon: Shalome’s brain has not split into two hemispheres (left and right) and forms one solid mass at the back third of our daughter’s head. There is no cavum septum (responsible for any form of development and mental function). Doctors apologise. I don’t get the booming hints. The ‘sorry’ is pointing the road to termination. Colin and I refuse termination. Our role is to love with our whole heart the gift of life that has been given us, no matter for how short. If Shalome was created to be born and loved, she has been passed to a family who are professionals at that. And we are honoured, in some strange way, that God entrusted her to us, and found us capable.

Beauty is only skin deep

New info is hard to swallow; the nonsplit of Shalome’s brain goes hand in hand with severe facial abnormalities; one nostril, cleft palate and only one eye. Whatever you do, don’t Google it.

‘Beauty is only skin deep,’ ironically taken to mean outward appearance is superficial, yet surely we really mean… ‘Beauty is deeper than the skin.’ The shallow side of me was shocked, scared, squeamish. I wondered if I could ever face to look her in hers.

The good news

A chaotic morning, and a mere five-ten minute consultation with yet another consultant. It was ‘good news.’ Although our daughter definitely has holoprosencephaly, it’s not alobar – meaning her life is incompatible with life outside of me – it’s semilobar holoprosencephaly: She has 80 per cent childhood mortality, estimated life to 8-10 years old maximum, the most extreme mental disability that you can live with, daily seizures, pain management. She will not be able to do anything herself; just breathe and some basic responses, like blinking.

I was at war with myself. My mind a fog. What kind of life is this? For Shalome? For our first born? For Colin and me? For everyone? What about our three-year plan to live, work (and will I ever be able to do that again?) and do mission abroad. Everything we have been aiming towards for years.

Again termination is offered (with vigour) and I feel out of my mind when that now seems like a happy option for all involved. All along termination has seemed like the easy get-out; ours the harder path seldom trod. And that treading just got more treacherous. But for us, it is never an option.

Over the other side of the bump

My first tears after Shalome’s birth were when I saw my first-born, Faith, 12 hours later in the entrance at Forget Me Not Hospice (an oasis in our desert). She calls me Mummy. And I am, now, to two girls under two.

Faith came into a room full of family to meet her sister; not how I envisaged the meeting – as a serene event and just the four of us – but a whirl of faces…family and hospice friends. A chaotic celebration.

Faith calls her ‘baby’ and knows her name… Shalome. We now have peace, with us.

After a textbook perfect birth (40 weeks plus six days), all things palliative and no fight for life, after being thankfully whisked away to respite and care at the hospice, Colin and I are wading through the emotions of loving not just one but two girls. Pause, think and ponder on such things; our first-born perfect and irreplaceable, our second we love as much yet oh so differently. She is almost to be held loosely, yet ever near, knowing she is born to be loved by so many more than just us. And she needs to be.

Right now? We want to pitch our tent here, to treasure these moments, to build an altar, to celebrate we have made it thus far! We dance in this space.

But please don’t pretend everything is perfect. Yes, she is beautiful beyond all predictions, but we grieve too. We are still learning how; how to grieve for the loss of something that we still have with us, but in part. We are not oblivious to the breath-taking-away ocean ahead, and we know the land is uncharted by most. I stop, learn to breathe, to capture this moment now. We dance in this space.

Faith is our miracle and Shalome is our testimony.

Baby Shalome

Shalome Harwood born 09/11/15