Only one thing is harder than lifting a white coffin — lowering one

As he thinks of the parents of Charlie Gard, Tony Heffernan, who lost both his children to Batten disease, says families need to have hope for their terminally ill child, and for themselves as they cope with their loss.

Spare a thought for all the parents who feel the same pain that Charlie Gard’s parents, Connie and Chris, feel right now.

Unless you have been in that position you will never really know the anguish and never-ending pain of being the parent of a child you know is going to die from a rare, genetic disease.

My wife and I have been down this road.

Not once but twice. It’s a lonely place. A road of many challenges and road blocks, many of which seem to be thrown in your path, some maybe just to try and break you down a little and some to test your resilience. It’s not easy.

Our journey started in 2009 when our Saoirse, then aged four, was diagnosed with Batten disease.

We were told to give her the simple life, take her away and enjoy the time we had together, be it “10 or tens of years” as the doctor put it. “There is no treatment” and “there is no hope” were common phrases we heard. There is no hope, what’s that all about?

What do you do in such situations? We were put in a heartbreaking situation at 12:45pm on September 25, 2009, with the news — told to us at Saoirse’s bedside in an open ward by a consultant and a massive team of junior doctors and students — that Saoirse was going to die. We were provided zero information from the medical team and left with a parting line by the consultant: “If you have any questions, I’ll be back on Monday.”

The most striking memory I have of that day is my wife breaking down in tears and Saoirse reaching out and saying, “no sad mom, me get better”. Our little princess picked up on the fact that she was the cause our upset.

That’s not right. I vowed that day to find some hope, for Saoirse, for Mary and me, and mostly for our family of four. At this point, our son Liam was with his grandmother in Kerry, oblivious to the tsunami of life-changing events that had just occurred.

Like Chris and Connie, Mary and I searched for hope, via the internet, ‘the Google doctor, and through social media.

This is a natural reaction for a parent in such a situation. You often hear parents say they would do anything for their children. Would any parent take on the system like Connie and Chris, or Mary and me?

Many do, predominately the parents of children who have extra needs, parents of children with a genetic or rare disease that is so complex, so rare that “no one” knows much about it. One thing I do know is that an ill child is an ill child. While you may not be able to treat the condition, you can treat the symptoms.

There is hope, there must be. But why do parents have to fight the system in their greatest hour of need when they should be encouraged, they should be comforted, and supported, and they should be treated like humans.

Whilst we searched for the cure, that magic pill that would save Saoirse, we were in fact realists. We knew that odds were 99.9% that Saoirse would most likely die, but that 0.1% is enough for any parent to keep the hope alive for their child.

We were also told that our son Liam didn’t have Batten disease, we saw hope for us as a family, to give Liam the best life we could — the long life we couldn’t give Saoirse. Three times we were told Liam was fine, three times that he didn’t have Batten disease, but a diagnosis from Great Ormond Street Hospital in May 2010 confirmed otherwise.

Three months after Saoirse died, we brought Liam to the same hospital in the US. It hadn’t help save Saoirse’s life, but we had hope for Liam.

We got Liam the trial treatment for Batten disease. Did it save him? Ultimately, no, but it did improve his symptoms considerably, allowed him to have less pain, an easier passage in this life. Liam passed away on our wedding anniversary in May 2014, three years after Saoirse.

But what now for Charlie Gard’s parents? All I can say is that there is hope, there is love, even though losing your child will hurt forever.

I wish our Bumbleance service, an ambulance service run by the Saoirse Foundation that Mary and I set up in honour of our daughter, was available in the UK for Charlie Gard, to bring him home on his final trip together with his family.

When you lose a child, you don’t just lose a loved one, you lose all the life milestones such as birthdays, weddings, grandchildren that you plan for.

They go to the grave with your child. Their loss still hurts every day. If you lose your parents you are an orphan. But if you lose a child what are you exactly? I’m still not sure.

There is only one thing harder than lifting a white coffin, and that is lowering one. My wife says that time is the most precious currency we have.

Spend it wisely and you will hopefully cope with the loss of your child, or in our case, children. Now it’s time to give Charlie, Connie, and Chris just that. Time.


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