A couple who successfully had a baby after years of IVF "disappointment" have now been told their miracle baby has a genetic disorder requiring a liver transplant.
In 2020, a year into their relationship, Danielle and Jeremy White began two rounds of in vitro fertilisation (IVF) through the public system.
"The first rounds that we did, we got five embryos, and then none of those worked. And then the second round, we got four embryos, so our chances were even slimmer," said Jeremy.
Embryo grading is a procedure that aids in selecting and evaluating the quality of embryos, based on criteria such as cell number, fragmentation and the development of the inner cell mass - the baby's future cells.
Danielle said she had begun to lose hope after suffering seven miscarriages and a failed pregnancy, and their final embryo was "going to be the lowest grade out of all the embryos that we had".
"So expectations weren't that high, and we were sort of thinking that this is going to be the last opportunity, because it's well over $2000 if you fund it yourself," Jeremy told 1News.
The Lower Hutt couple said they had already prepared for "the worst case scenario" when the test results returned successful.
"It's a little bit of disbelief, because at that point, we'd had four years of just disappointment," he said.
"When you actually get given the news of 'no, you're still pregnant', it's sort of like you don't actually know how to react to it, because you've only ever had bad news."
Danielle added: "All throughout my pregnancy, I was in disbelief. When I went to the 12 week scan, I was like, 'OK, I'll believe it when I see a baby there'."
The pregnancy continued, and after her waters broke early at 33 weeks she underwent an emergency C-section. The couple's miracle baby Liam - weighing just 1.86kg - arrived on March 17 this year.
"When he came out, they had to keep monitoring him because of his heart rate, it wasn't staying consistent, like it should do. And when he came out, he was yellow. From that point they thought something may be wrong with his liver," Jeremy said.
Hospital staff did some scans of Liam's heart, and discovered an atrial septal defect, which is a hole between the heart's upper chambers.
"They pretty much turned around to us and said that we have to prepare ourselves, because they were going to put a breathing tube in him and he was most likely going to be sent up to Starship.
"That was the worst day of our lives," Danielle said.
"When he was in hospital, one of the hardest things that we faced was that we had a baby, but we had to leave the hospital without a baby. It was pretty much like we had nothing," Jeremy said.
What was originally thought to just be a heart condition turned out to be alagille syndrome, a genetic disorder which affects the liver, heart, kidneys and other organs.
People with alagille syndrome have fewer small bile ducts inside the liver than normal, meaning bile can build up and cause damage.
The couple said Liam would need a liver transplant and would likely be moved to Auckland's Starship hospital for specialist treatment due to his high needs.
Jeremy said: "My worst fear is that Liam goes in for this operation, has a liver transplant, and then we're like, 'oh, awesome. This has worked'. And then a couple of months down the track, his body rejects it, and we're back to square one."
"I don't want to deal with, you know, my loved child going through all that stuff, even though he won't remember it or anything. Yeah, just, seeing your loved one having an operation and being in pain and stuff is not nice," Danielle said.
The couple started a GiveALittle page for donations to support the family while both parents were focused on Liam's recovery.
"[I] won't be going to work, not just because I don't want to, but because of everything with Liam, it's it would be too difficult to work, and also, a child care centre probably wouldn't be able to look after him, with him being high needs," Danielle said.
Jeremy said they were "very lucky" that most of Liam's medication was paid for through the public health system, but other costs including travel and general expenses had stacked up for them.
Despite their years of heartbreak, hope and determination, the couple remain strong and are optimistic about the next steps in the journey for their "deeply treasured" son.
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