Supporting Rebekah's journey at CHEO
Newborn Rebekah is seen here with her mom, Sylvia.
Newborn Rebekah Guirguis has been at CHEO’s NICU for her whole, short life.
Immediately after Rebekah was born on Nov. 7, 2017, a cardiologist at the Children’s Hospital of Eastern Ontario (CHEO) found multiple problems with her heart.
She was born with two holes in her heart and a liver condition known as Biliary Atresia.
“Our time cuddling her was brief because she was born with a fever and they were concerned about her breathing. It was the first of many times that our desire to be there for her in a conventional way would go unrealized,” said Nathan Guirguis, Rebekah’s dad. “She needed more care then we could provide.”
Due to breathing and other health related issues she is on a Paediatric Bipap machine and multiple medications.
Now 92 days and counting, these multiple surgeries and recovery time will require Rebekah to remain hospitalized for an indefinite length of time.
“Surviving septic shock last week was a really good sign and her liver remained mostly unchanged and hasn’t continued to deteriorate,” said Nathan. “The doctors also think that her liver may continue to improve after heart surgery as they believe perhaps part of what's holding her liver back from fully recovering is the back pressure from her heart onto her liver.”
With open heart surgery scheduled for Feb. 6, her dad said that they are currently “in the midst of relative calm between violent storms in Rebekah's journey” and they remain hopeful that their daughter will pull through.
“They do these surgeries all the time here at CHEO but Rebekah's procedure is described as ‘higher risk’ because other organ systems leave the doctors with questions,” said Nathan. “Open heart surgery will be the monumental battle that will determine the outcome of her war with congenital heart disease. She's a strong fighter. She's a heart warrior. To us her name means ‘hearty’. It comes from a Hebrew word that means ‘to tie together’. She's certainly tied us all together in praying and hoping for her.”
To remain by their daughter’s side, parents Nathan and Sylvia Guirguis have had to temporarily move from their Garrison Petawawa posting to a post closer to the hospital.
Consequently, Nathan and Sylvia have had to pay rent for both homes throughout the past two months which has swiftly added up. As well, with Sylvia and Nathan remaining by Rebekah’s side at the hospital, alternate child care has had to be arranged for their other two children.
“Right now we’re stationed at the Ottawa's base's emergency military housing unit, but we’re having to pay rent for both our Petawawa home as well as this home while we’re here,” said Nathan. “And while Sylvia and I have been at the hospital, we’ve been sending our other two kids to daycare because they need stability and routine which the daycare can provide to them.”
To help with the expenses involved, Sylvia Guirguis’ aunt created a Go Fund Me campaign to raise $15,000 for the family.
The crowdfunding page was launched on Jan. 15 and by Feb. 5 they had raised $15, 575.
The funds would help cover the cost of daycare/childcare for Rebekah’s siblings while their mom Sylvia is at the hospital, the cost of gas for Rebekah’s dad to drive back and forth from town to the city, and funds to cover the extra cost of rent for their ‘second’ home in Ottawa during Rebekah’s stay at the hospital.
Nathan expressed that his family is tremendously grateful for all the heartfelt kindness and generosity that they’ve received from the community so far.
“Sylvia's aunt started the fundraiser and we already raised more than $11,000 in 20 days/. Then on Feb. 5 we reached our goal thanks to a $4,000 donation from Alison Morris,” said Nathan. “We are extremely grateful. People are helping us in a way that has really been a blessing.”
He added that if there are any excess funds, they will donate the remainder to a charity of their choice.