The Voices

The McLeod’s

Spinal Muscular Atrophy (SMA)

In January 2018, Lani McLeod and Jacinda Ardern were walking the same maternal path.

The two women were pregnant, their pre-natal tests all indicated a healthy pregnancy, and like every mother-to-be, they were both hoping for straight-forward, uncomplicated deliveries.

On June 21, the Prime Minister delivered a healthy 3.31kg baby girl, capturing the attention of the world’s media, and prompting a heartfelt message from the Queen.

Eleven weeks later, Lani gave birth to a healthy 3.77kg baby boy, a brother for elder sister Thea, and the happy news spread quickly through the small, tight-knit community of Methven. Friends and family left Tupperware, chock-full of scones and home-baked biscuits, at the front door.

In hospital, both babies passed the ‘heel prick’ test; the colloquial term for the Newborn Metabolic Screening Programme which, soon after birth, tests for 23 rare and potentially fatal genetic conditions. Lani and Jacinda both left hospital clutching healthy, newborn babies.

It was 10 months later that a fork appeared in the road, and Lani and the Prime Minister began to part ways on their mothering journey. The Prime Minister’s daughter, Neve, reached her developmental milestones in the first year, but Lincoln was in trouble. The sweet little boy had a sharp mind, but his body couldn’t keep up.

“He could roll over and he could sit up, but he couldn’t take weight on this legs.”

By the time Lincoln was one, Lani was pregnant with her third child. But along with her husband Jim, she was growing increasingly worried about Lincoln. The paediatrician put Lincoln’s symptoms down to ‘gross motor delay’ and suggested they see a physio.

Another six agonising months went by and Lincoln was still showing no signs of improvement. The physio insisted the paediatricians go back to the drawing board.

“He was tested for Muscular Dystrophy. He was x-rayed, his hips were checked, he had an MRI to see if he had spinal trauma or had suffered a head trauma at birth. Every time the tests came back negative. And the whole time we were watching Lincoln physically deteriorate in front of us. I can’t tell you what that is like. We are his parents, we’re all he has and we can’t help him. It’s the worst feeling in the world.”

On the eve of the first Covid-19 lockdown, when Lincoln was almost 18 months old and the McLeod’s still didn’t have a diagnosis, the paediatric team ordered a more detailed set of blood tests. Six weeks later, the results came back.

Lani and Jim drove to Christchurch for an appointment with a neurologist. Yes, they had a diagnosis. No, the news wasn’t good. Lincoln had Spinal Muscular Atrophy (SMA), a muscle wasting disease and the biggest genetic killer of under-2s in New Zealand.

“If I’m honest, we just didn’t understand it. Jim didn’t know what SMA was. I didn’t know. We didn’t know how to tell our parents. I didn’t know what it meant or what would happen to Lincoln. It was too much to process, and then we were told the baby I was carrying had a 25% chance of having it too.”

Jim can’t remember much of that day.

“I don’t know what was going through my head. I just know it was a really hard drive home to Methven. It was long and it was quiet. I just wanted to get home so I could start researching what I could do. It’s how my mind works, I just needed to know everything about this disease.”

Spinal Muscular Atrophy is considered a rare disease. One in 54 New Zealanders carry the faulty SMA gene, although most don’t know it. If both parents are carriers, there is a 25% chance their child will have SMA, a disease characterised by muscle weakness and wasting. It ranges in severity and prognosis.  

Infants with SMA Type One who have no access to treatment, will die before their second birthday. Those born with SMA Type Two, like Lincoln, can lead full lives if they are diagnosed early and can access medication. Without it, they will never walk and may need significant respiratory support and a feeding tube.

In the past decade, three drugs have been developed to treat SMA and are being funded in 58 countries, including Australia. In New Zealand, we don’t screen babies for SMA and we don’t fund the new medicines that will treat the disease.

Lani is at a loss to understand why New Zealand won’t include SMA in the Newborn Screening Programme, and instead leave kiwi kids to die or become wheelchair-bound from a disease that is treatable.

“It the hardest thing to get my head around. There is a medicine funded in almost every developed country to treat children like Lincoln with SMA, but not here. Here, at best our children suffer. At worst, we are leaving children to die.”

When Lincoln was diagnosed with SMA, Lani was two weeks off giving birth to Harlan. She could do nothing except pray that her unborn baby, like their eldest child Thea, would dodge SMA’s devastating genetic timebomb.

“I think I blocked out what was going on in my head at the time. It was just so difficult. Everything was coming at us…. Lincoln’s diagnosis and the fact I was having another baby in two weeks.”

A fortnight later, Lani and Jim were in a delivery suite at Christchurch Hospital. Physically, Lani thought she would be fine, and she was. However, she still can’t explain what happened in the moments before she delivered Harlan. Mentally, she says, she lost it.

“Just before Harlan was born, just before I delivered him….I don’t know how to describe what happened. I just didn’t think I could do it. I’d only found out I was a carrier of this gene two weeks before, and I knew once this baby was born he would be tested. And even though he only had a 25% chance of having SMA, I knew it could kick-start this whole process again. And I guess that all came to a head in the moments before he was born. And I was just gone. Mentally gone.”

In the moments that followed, Jim, Lani’s mum and the hospital staff helped her through and Harlan was born. From the moment she saw him, Lani said all the anguish disappeared.

“I just wanted to hold him. He was beautiful.

At some point, a blood sample was taken for the Newborn Screening Programme, and because of Lincoln’s diagnosis, Harlan was tested for SMA.

“I remember lying next to him in hospital. That was such a special time. He was my little baby boy and in that moment, in that time, everything was perfect. I kept looking at him. I stopped thinking about the future and I loved him with everything I had. I just held him and I didn’t take my eyes off him. He was perfect.”

Lani was alone with Harlan in hospital when the results of the blood test came through. Jim was in Methven with Thea and Lincoln, and more than an hour’s drive away. The doctor wanted to tell Lani and Jim when they were together, but Lani insisted he tell her straight away.

“I told him I couldn’t wait. I said ‘please, just tell me’. I need to know the results.”

The odds, tragically, had gone against the McLeod’s. The blood test had revealed that Harlan, like his older brother Lincoln, had SMA.

“I just held Harlan and I cried and cried. Lincoln had only been diagnosed two weeks before and I looked down at this tiny little baby knowing that he was about to face the struggle of his life. I knew what Lincoln had been through. I knew what Jim and I had been through. I knew the medicine wasn’t funded, and I didn’t know if we could do it all again.”

Once the McLeods were back together in Methven, surrounded by their families and the community, Jim and Lani did everything they could to access treatment for their boys.

“I came home and I started writing. I wrote to Pharmac, I wrote to the Minister, I wrote to the Prime Minister. I was just begging them to fund this medicine.”

The McLeod’s neurologist submitted several funding applications to Pharmac. Every time, the applications were turned down. Jim tried to remain strong for his family, but it was a struggle to stop his exasperation bubbling over into anger.

“….every rejection was tough. I can tell you the drive home from the specialist never got any easier.”

Harlan began to deteriorate faster than Lincoln. Lincoln reached some developmental milestones, but Harlan wasn’t progressing at all.

“Harlan couldn’t hold his head, he rolled over once and then never again.”

Lani wrote personally to the Prime Minister and received what she describes as “a copy and paste” response from the Health Minister.

“I want the Prime Minister to know that I was just like her. I was her until one day I wasn’t. What happened to my family could have happened to Jacinda Ardern’s. It is horrific watching your child decline knowing there is a medicine, knowing that over 50 countries provide access to this medicine, but we don’t.”

“This is not Pharmac’s issue to solve. This is yours, Prime Minister. This comes down to your Government providing Pharmac with the right amount of money to buy the medicines that will look after New Zealand families. Families like my family. Families like your family. Kiwi kids don’t have to be crippled by this disease. They don’t have to die.”

In March, the world turned on its axis for the McLeod’s. They were granted compassionate access to Risdiplam, one of the Swiss modern medicines developed to treat SMA. Lani says it’s a wonder drug.

“Lincoln had the first 5mls of medicine and the impact was incredible. Within a week he was a new child. He started lifting his arms, he could take a biscuit from me, he’s just so much stronger.”

If Lincoln had been diagnosed and treated from birth, he wouldn’t be in a wheelchair and facing a long, challenging journey to walk. Harlan, despite showing more severe symptoms, is now rolling, sitting up and is reaching his developmental milestones.

“It’s the difference between diagnosing at birth and getting access to the medicines. And it is so sad that there are kiwi kids just like our boys who are being left to waste away. We have lived this life, and we are still here fighting to help other families. You have to test newborns for SMA and you have to fund this medicine.”

“This is what it comes down to. Pharmac can negotiate a good price for these drugs, but only if the Government gives them the money to do their job. New Zealand children are dying from a treatable disease. How can we stand by and let this happen? How?”

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