Archie Wallace-Bagley did not live to see his first birthday. Joy Dobbs has just had lifesaving open heart surgery at seven months old. One a heart angel, one a heart warrior, they are both "heart kids", one of the 12 New Zealand babies born each week with a heart defect. Their mothers speak about the grief and challenges of raising heart kids, and how they could not do without the support of a charity which receives no government funding.
Heather Stuart woke with a start to the loud ringing of emergency alarms in Ward 23B, Starship Hospital.
She and her six-week-old son Archie had been admitted to the heart ward just days earlier for cardiologists to investigate Archie's heart. Stuart thought the hole in his heart found in Tauranga could be "easily patched up".
Hearing the bells filled her with terror.
Earlier that night she'd heard staff resuscitate a young child in the procedure room just opposite hers.
Now she heard staff again frantically running to that same room. She opened her door and saw the child's distraught mother in the corridor.
"It was a horrible scene…as though everyone knew he probably was not going to make it. The mother was sobbing and calling out for her little boy. My heart went to her and I just wanted to sob with her and wrap my arms around her."
Unable to be of any help, Stuart went to check on Archie.
He was fast asleep in his hospital cot, looking peaceful, his chest rising and falling slowly.
Sucking softly on his dummy with teddy tucked at the end of the bed he looked peaceful, like any other sleeping baby boy – apart from from the naso-gastric tube that fed him, taped to his cheek, and the web of wires and tubes that hooked him up to monitoring machines.
Heart kids are fighters. They are warriors.
Stuart recalls that night when she heard the emergency alarms and witnessed the distressed mother as a pivotal time in her son's life.
"A sad and realistic moment" when it dawned on her that some kids didn't make it out alive of Ward 23B, the children's heart ward which treats babies and children born with heart problems.
Stuart leaned over Archie's bed and looked at her son's tiny body.
"In here death could come calling. Not all cases were easy, fixable or curable. I realised I could lose Archie in literally a heartbeat."
"Heart kids are fighters. They are warriors. Sometimes these beautiful warriors grow tired and grow wings and become heart angels."
In that moment of realising this she leaned over and kissed Archie softly on the forehead,
"I told him I would love him forever whether he was a warrior or an angel."
Almost a year later, back in Tauranga, Stuart has just thrown a party for Archie's first birthday. Blue balloons, presents, and a cake with one candle.
Archie wasn't there to celebrate with his family. He died from complications from his heart defects in Tauranga hospital, two weeks before Christmas. He was just 9 months old.
He's an angel. And a warrior.
Support for heart families
More than 50 New Zealand children each year lose their battle with congenital heart defects (CHD), the number one cause of death for infants and newborns in New Zealand, says Rachael Parkes, Bay of Plenty Heart Kids coordinator.
More than 8500 families including the Stuarts and Dobbs are supported by the charity nationwide which provides emotional support such as education, counselling and groups, as well as practical help with finances, specialist equipment, family days and camps.
The charity receives no government support or funding and relies on public fundraisers, says Parkes.
Next week on March 10, the Bay of Plenty will be the first location around the country to host a Heartstopper ice bath challenge. Teams of up to 6 people sit in a tub of 10 degree water for 360 seconds (six minutes) to raise both funds, and awareness for the 12 babies who are born with heart defects every week in New Zealand – the heart kids.
The idea of the challenge came from the father of a heart kid, with the icy water representing what the children endure during a heart operation. An icy slush is packed around the heart allowing surgeons more time to perform their life-saving operations says Parkes.
Every year in New Zealand, more than 550 major heart surgeries are performed on children or babies.
He never got the chance
Archie never got to have surgery - he could not reach the required weight.
Just before he died, Stuart was preparing to move to Melbourne where Archie had a chance of receiving an heart transplant.
He never got the chance. After developing an infection, he was admitted to Tauranga Hospital.
His organs failing, the cardiologist who had cared for him since his defects were first discovered told Stuart it was time to say goodbye.
That night Stuart had to tell her older son, three-year-old Zayden that his baby brother was very sick.
"That was when it hit me. I looked at Zayden and felt life was so unfair. He won't have his brother around, they won't get into mischief, go fishing, share a room, grow up together."
Archie took his last breath on December 14, less than two weeks before Christmas.
A mother's grief
Stuart says it is a strange kind of grief, in some ways drawn out as since that April night back on Ward 23B in Starship, she had always known of the possibility he might not survive.
"But I did not really believe it. When we drove home from Tauranga Hospital and I got Zayden out of his car seat, and then there was the other car seat –Archie's car seat, it just came over me that he wasn't there. I went in the house and saw his toys, his cot. I had put Christmas presents away for him - a taggy cube, some books, a wind chime.
"It was then I thought...he will never be here again. I will never hold my baby boy again."
Christmas passed in a blur.
"I wanted to curl up and cry, but I also wanted to be strong for Zayden. We opened Archie's presents."
The hardest moments for Stuart are when Zayden asks where he is, saying,
"I'm sad Mummy, I miss Archie. Mummy needs hugs?" "Mummy misses Archie?"
Archie's room remains untouched since that day. His baby clothes and bibs are neatly folded on the shelf, his little blue socks paired in the drawer.
His Heart Kids teddy with its red heart and "stitches" has now been "adopted" by Zayden who carries it around by the hand.
Just two months after losing her son, Stuart's grief is still raw.
"I have moments of wanting to curl up and cry. I miss him so much, he was just developing his personality. Cheekiness, quiet playfulness, chuckling at his brothers' antics. I think of what might have been. I miss holding him, cuddling him and kissing him. Bathtimes with bubbles were a special time as that is when I saw him without cords and wires. I miss his chest rising and falling, his little noises."
Even the "stressful holidays" at hospitals, with constant blood taking, tests, monitoring and medications have left a hole in Stuart's life.
Some CGDs are diagnosed in utero, some at birth, and some not discovered until later.
Archie fell into the last camp.
His birth had gone smoothly, and he seemed healthy, weighing 3.7kgs.
When the midwife noticed a tongue and lip tie affecting feeding, he was referred to the local dentist at four weeks.
After the procedure he became grey, clammy and floppy and was rushed to A and E.
When doctors there told her he had a heart murmur, it didn't seem something overly serious. Doctors told her lots of babies were born with one, 25 per cent, and most of them outgrew it, or it could be fixed.
However further tests done in Starship revealed he had more than one defect.
"They told me to sit down, and they had some news. They told me the hole in his body was bigger than they thought, and something was wrong with both of his chambers so the blood wasn't flowing around his body properly. "
The medical terms once alien to her now trip off her tongue. The hole in the heart, or ventricular septal defect causes tachycardia, an abnormally fast heart rhythm.
Archie's heartbeat was counted at 260bpm (beats per minute) to as high as 274bpm. Normal range for infants is around 90-160bpm, Stuart was told.
In addition, he had Left Ventricular Non-Compaction or LVNC formed in utero, affecting the ability to pump blood around the body.
"The inside of Archie's heart was like a plaster of Paris mould where someone had left finger holes in it…the blood was just pooling in these holes."
Archie's right ventricle had cardiomyopathy, a type of deformity.
"It looked like one of those party balloons that are bumpy."
Stuart and Archie became familiar with Ward 23B and their room with its view of the Sky Tower and helipad.
There were rounds of blood tests - once she remembers six vials being taken at once.
"His heels were covered in prick marks and they they had to squeeze his tiny hand to get the blood out. They even considered trying his temples."
Sometimes he would throw up.
He struggled to put on weight and although Stuart had tried valiantly to continue breastfeeding and pumping, he had to be given formula.
"That was our bond, when we had to give him the bottle I just cried."
Tired from being his sole carer with family back in Tauranga, little things would niggle Stuart – having to traipse across the hospital to the washing machines, not sleeping from the constant monitoring.
"I cried I couldn't breastfeed. I mourned my normal life…having a heart baby…it was hard all of it, I had dark thoughts…even of ending it."
Diagnosed with depression, a counsellor came to see her.
Friends and family rallied around. Her Grandma was her "rock" taking Zayden to Mainly Music, Playcentre, cooking, and washing clothes. Friends delivered groceries. Heart Kids visited her on the ward.
"It kept me going."
Rachel and Joy
Heart Kids also hook up mums with other families and a support group meets regularly in Tauranga.
Families attend with their babies, but there are some like Stuart, who attend alone.
There she met Rachel Dobbs, a mum of three whose baby Joy, at seven months has just had lifesaving heart surgery, without which she wouldn't have made it until two years old.
Three weeks after surgery Joy's scar is visible over her vest, like someone has tried to saw her in half. She giggles, rolls, burps and spews a little on the floor, like a normal happy baby girl.
Joy's heart defect was discovered in a scan when Dobbs was 32 weeks pregnant.
"I noticed they kept looking at the heart. Then they sent me for another scan. The radiologists don't tell you but I could tell something was up…my midwife phoned me and said she had Tetralogy of Fallot."
Bewildered by a Game of Thrones sounding syndrome in a pregnancy that had been healthy so far, Dobbs took to Google.
Considered one of the most common CHDs, affecting one in 2000 children, Dobbs hoped that it was "garden variety TOF" which had good outcomes after surgery.
Despite this Dobbs found the diagnosis of a heart defect "devastasting".
"There were a lot of tears…I cried for two weeks..in the shower, in the car, at work..there was a lot to take on board. "
Dobbs found it a tricky thing to share.
"Pregnant friends were going through normal things…planning their births, or baby rooms. I was thinking about open heart surgery."
A Starship team did the heart surgery and Joy was discharged just a week later.
"I don't think there's anything that can prepare you to see your child lying there with the stitches, drains and IV in the neck. It is very confronting but at the same time I reminded myself it is literally lifesaving surgery."
It is unknown what other surgeries Joy may need. Ninety per cent of children with TOF live to adulthood. There is a lot to hope for.
"It is hard to know, there is a scale..she might have limitations to physical exercise..we are just taking each day as it comes. It is not the end of the world if she is not a marathon runner. "
A light amid the darkness
Heather and Rachel say the support they continue to receive from Heart Kids has been immeasurable. They say it's allowed them to see a light amid the darkness.
Like Stuart, Dobbs found the support of Heart Kids "incredible"
The Heart Kids counsellor Leanne met us in the hospital with muffins and pamphlets and was always there for us with emotional and practical support. They are amazing…there are some pretty dark moments when learning about this."
Dobbs has a team ready for the ice challenge called Ice Ice Baby. "Not too late to join", she tells Stuart.
Stuart says she will come, but doesn't like the cold. Like Archie, who was happiest when he was swaddled.
The mums laugh, like any young mums meeting for a playdate. But one baby is missing.
Joy plays with the nose of her own Heart Kids teddy while Zayden clutches his brother's.
Zayden grabs Joy's teddy for a moment and stages a playfight of the bears.
Dobbs tells him to be careful.
"That is your brother's special teddy, like Joy's special teddy."
Being around other heart kids does not make Stuart sad.
I prefer him to be talked about rather than ignored. Knowing that he actually existed
"I prefer him to be talked about rather than ignored. Knowing that he actually existed."
She likes being with people who understand. The friendships help her through.
As does the memory of the time she did have with her youngest son, with the words of the farewell note she wrote him at his passing etched forever in her own heart.
"Thank you for choosing me to be your Mummy. I love you more than anyone else will ever know and my heart will always ache and my arms will forever be just a little bit achy with emptiness from you.
"Sweet dreams my Wee Archie Boy."
What is Heart Kids
• Heart Kids supports those living with a childhood heart condition and their families.
• Every week, 12 babies are born with a congenital heart defect (CHD) in New Zealand, affecting an additional 600 families a year.
• CHD is the most common serious birth abnormality in New Zealand. There is neither prevention nor cure
• Every year in New Zealand, over 550 major heart surgeries are performed on children or babies (sometimes in their first few hours of life).
• Annually over 50 heart kids will lose their battle
• CHD is the number 1 cause of death for infants and newborns in New Zealand.
• Living with a heart child can be an ongoing issue. For many families, it is a stress that they live with every day.
• Heart Kids provides emotional and practical support from when the heart condition is diagnosed through to the teenage years and into adulthood.
• Services provided by Heart Kids include information, education, training, counselling and psycho-social support, specialist equipment, camps, family matching, social affiliation and financial assistance.
• Heart Kids has over 8,000 members and is growing by 15% each year.
• Heart Kids is not affiliated to the Heart Foundation.
• Heart Kids receives no government funding
• Heart Stopper Challenge involves teams of up to 6 people sitting in a tub of 10 degree water for 360 seconds (6 minutes) to raise awareness for the 12 babies who are born with heart defects every week in New Zealand.
• The challenge will take place on March 10 from 9.30am at Coronation Park, Mount Maunganui
• To register go the Heart Kids Bay of Plenty Facebook page or www.heartstopper.org.nz.
• To donate: www.heartkids.org.nz or Facebook page at www.facebook.com/heartkidsnz, call us on our free phone 0800 543 943 or email firstname.lastname@example.org