Mother’s Day will be especially sweet this year for Deb Humphreys and her husband Matt, coming seven weeks after the premature birth of their identical twin daughters Hannah Rose and Ellie Grace at 26 weeks’ gestation.
Deb said it is miraculous the tiny twins – born weighing just 1145g and 695g respectively – were delivered so healthy, without the many health complications they faced.
“It’s so incredible that they are here,” Deb said. “The whole pregnancy had been very challenging, so it is amazing that they have made it.”
Deb has spent almost every day since being discharged making the 45km drive from their Waterfall home to the Royal Hospital for Women where the twins remain in the Newborn Care Centre.
With Matt back at work as youth minister of St John Bosco, Engadine, he and Deb have relied on their parents for support, particularly childcare for sons Nate, five, and Levi, two.
“Both sets of parents do so much for us,” Deb said.
But despite the demands on their time, Matt said their priorities became clear very quickly. “Everything was put on hold,” he said. “Everything else suddenly didn’t matter as much.
“We will worry about all the other stuff when life starts up again.”
For Deb, the presence of her daughters makes up for the tiring days, hours in traffic and sleepless nights.
“It’s made this journey a lot easier just knowing at some point we worried they might not be here at all,” Deb said, “to be able to see them and hug them, to see them grow, and know that they are basically going to be ok and come home one day”.
A miscarriage last August made the safe arrival of the twins particularly poignant.
“I really struggled with that,” Deb said of the loss at 12 weeks of the baby they named Grace.
“A lot of people suddenly started sharing about miscarriages they had had or babies they had lost.
“I don’t know what I would have done without my faith.”
When she became pregnant with the twins months later, Deb’s instinct for self-preservation kicked in.
“When I was pregnant with Grace, I planned out the next 12 months. I knew everything that was going to happen: she would be born in this month, this would happen, that would happen, and then everything fell apart.
“We were only 11 weeks pregnant when we found out the girls had problems, so after that I was too scared to think about anything.”
Keenly aware of how easily the pregnancy could end in tragedy, she resisted the urge to nest. Baby clothes stayed in storage, the twins’ bedroom remained undecorated, and friends largely respected her wishes to hold off on gifts.
It was only recently, more than a month after Hannah and Ellie were born, that a cautiously optimistic Deb and Matt purchased something for the twins’ bedroom: a chair.
It was this same cautious optimism that prompted them to decline an offer by Engadine parish priest Fr Mick Court SDB to baptise the twins in hospital.
“Fr Mick did offer to baptise them, and as much as we liked the idea, it felt a bit too much like giving up,” Deb said.
“We decided, no, they’re going to be ok.”
Able to look to the future at last, Deb now awaits the day she can witness her baby daughters being welcomed into to the faith, and into their extended parish family.
“We want to make the baptism a really big celebration at Bosco,” she said.
Despite their long history of involvement in the Engadine parish, Deb was surprised and overwhelmed by the outpouring of support from the community.
“The parish has been so generous, making sure we have everything we need.”
Fr Mick said it was heartening to see the parish’s generosity towards the Humphreys family.
“They are an incredibly giving couple,” he said.
“It’s fantastic, the level of support that has come from the parish.”
Fr Mick praised the example of “nurturing love” shown by parishioners.
“The greater majority of people supporting them are young mums, and this is an extension of their motherhood,” he said.
“It’s powerful to see them reaching beyond their own families to offer that support.
“I find it very inspiring, and I’m very, very grateful.”
While family and friends have cooked meals, offered babysitting, and offered prayers, many still felt a sense of helplessness.
From that grew two special campaigns.
Matt’s father, Roy, will run the SMH Half-Marathon on 15 May with the Running For Babies team to raise money for the Newborn Care Centre. Two pieces of equipment that have proved vital in the care of Hannah and Ellie are the Neurally Adjusted Ventilatory Assist – or NAVA – ventilators.
While the NAVA ventilator has been used in adult and paediatric intensive care units for some time, and in newborn intensive care units in Europe in recent years, the Royal Hospital for Women is the first in Australia to use the device with at-risk newborns, replacing a conventional ventilator.
With a minute electrode in the feeding tube, a NAVA ventilator picks up the electrical signal coming from the baby’s diaphragm which starts before the baby’s breathing could be detected by the naked eye, said Dr Srinivas Bolisetty, lead clinician and senior neonatologist in the Newborn Care Centre.
“This electrical signal triggers the ventilator to generate the breath and makes it lot easier for baby to breathe,” he said.
The two NAVA ventilators in the Newborn Care Centre were purchased by the hospital’s fundraising body, the Royal Hospital for Women Foundation, at a cost of more than $59,000 each.
“We just feel really blessed that this is provided for our community,” Matt said.
“Just one piece of equipment would be more than we could afford.”
“My dad’s always loved running, and it’s a small way of giving back so someone else can continue to be blessed when they need all this amazing support.”
Roy has raised more than $2500, while the Running for Babies team has garnered more than $143,000 in donations so far.
On the other side of the family, Deb’s sister, Helen, has organised a blood drive to acknowledge more than a dozen transfusions of blood and other blood products the twins have received.
“If everyone who is praying and thinking of Hannah and Ellie gave a donation of blood, imagine how many lives could be touched,” said Helen, who established a RED25 donation group with the Australian Red Cross Blood Service to tally donations made in the twins’ names.
With more than 24 donations already made, Helen was optimistic about reaching her goal of 100 donations by the twins’ first birthday next March.
Helen said she was in awe of her sister’s “strength, faith and tenacity”, and the courage displayed by her nieces.
“I want to be able to say to my nieces one day, ‘Look how many people were inspired by your incredible journey, look how many lives have been saved in honour of you both’.”
The growing list of groups and communities praying for the Humphreys family includes the Bosco community; Shirelive Church; Connect Church, Engadine; Narwee Baptist church; Notre Dame, Shepparton; National Council of Churches; and the National Ecumenical Office. And their fellow Engadine parishioners Jerard and Enda Barry devoted part of a recent pilgrimage to Santiago de Compostela to praying for the twins.
“It’s almost embarrassing how much they are covered in prayer at the moment,” Matt said.
“We’re plugged into a lot of groups, and people from those groups are spreading the word, so there is a really big prayer chain for them.”
With so many people to keep apprised of the twins’ progress, Matt and Deb established a blog which they update almost daily.
As well as being an efficient way to update hundreds of relatives and friends, the blog has been cathartic for the couple.
“It’s been very therapeutic for Deb to be able to put down her thoughts and get things off her chest at the end of the day,” Matt said.
After experiencing all that motherhood has thrown at her in just five years, it is “the hardest job in the world”, Deb said, “but the most beautiful.
“It’s so rewarding. I love being a mum.”
For Mother’s Day she advised mums, especially new mums, to “take the pressure off yourself”.
“Being a mum is very hard,” Deb said. “The people who make it look easy are probably struggling like everyone else; they’re just not showing it.
“My house is putrid but I know that doesn’t matter at the moment.
“There are things that are important, and at the moment those things are me sleeping and my children being fed and clean.
“You just get through the day, and it doesn’t matter what other people think of you or what else is going on, you just do what you can.”
Read: hannahroseelliegrace.wordpress.com
Give: donateblood.com.au/red25