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Jessica Lambrick and Isaac Miller wanted nothing more in life than to be parents. And for six days in December they were.
Hannah Mary Catherine Miller was born in Vancouver late in the evening on Dec. 4.
“She had quite the personality in those few hours we got to know her,” Lambrick says.
“They give all the babies toques and she liked covering her eyes – like a gangster pulling it over her eyes,” Miller interjects, laughing. “She loved to have it just over the bridge of her nose.”
“It was just amazing when someone would ask, ‘Are you the mom?’ It was a shock factor – I actually am a mother. I have a daughter, and she’s perfect. Everything about her was perfect, except for her heart and lungs.”
Lambrick’s pregnancy was problem-free until just days before the Nov. 29 due date. But during an ultrasound in Victoria at 39 weeks doctors noticed something wrong with Hannah’s heart.
At the suggestion of a cardiologist, the high school sweethearts relocated to BC Children’s Hospital in Vancouver for the birth. Despite a barrage of ultrasounds, doctors weren’t able to pinpoint the exact heart condition until Hannah was born.
“It was heart-breaking, knowing she would have a heart defect. It was absolutely devastating. And we thought that was the worst of our worries, and it wasn’t,” Lambrick says.
Even with a heart condition, Hannah was born a seemingly healthy baby at eight pounds, nine ounces. Her little body appeared to be in perfect working order – her heart wasn’t causing her any problems.
“She was the healthiest child in that (pediatric) intensive care unit. We were thinking, ‘Oh my gosh, she shouldn’t even be in here.’ It didn’t seem right. And then after 24 hours, things…,” Lambrick says, her voice trailing into silence.
Hannah’s heart defect soon took a backseat to a congenital lung problem that only manifested after a full day.
“When she would cry she’d just turn blue. She’d kind of whimper and be uncomfortable and then settle down, but you’d notice her hands and feet were just blue. And it’d slowly progress to the point where she was all blue,” Miller says.
Hannah’s lungs were failing her body, and for the next four days she was kept stable, hooked up to numerous machines helping her breathe and survive.
“She was very sick. Every day was just a complete roller coaster, and there were a few times where they just about had to put her on life support,” Miller says.
“She was really working the doctors hard to figure out what she had. … Dr. (Arthur) Cogswell, one of our doctors, he never gave up hope. Because of him we kept thinking, ‘Okay, she’ll get through this, miracles happen.’ That support was exactly what we needed to stay strong for Hannah,” Lambrick says.
“It all happened so quickly. She started to deteriorate, and it was just one thing after another, and the next thing you know she’s hooked up to about 50 different machines, it seemed, and they had to paralyze her, and sedate her, and she was on about 20 drugs to keep her stable.”
By the morning of Dec. 10, no combination of drugs or machines was helping Hannah.
“It just got to the point where there was literally nothing more we could do,” Lambrick says with tears streaming down her cheeks.
“Dr. Cogswell, even right down to the end, he was not going to give up. And I just put my hand on his shoulder, he looked at me, I looked at him, and he said, ‘Would you like to hold her?’” Miller says. “It just wasn’t physically possible to hold her (before then) because there were so many machines hooked up to her, so they unhooked everything.”
Hannah died in her parents’ arms. She was six days old.
Cogswell, a critical care physician at BC Children’s, says despite more than 20 decades in his job, it doesn’t get any easier watching what Hannah and her parents went through.
“It’s always hard because to tolerate the treatments we were giving Hannah, we have to keep her comfortable. The last thing you want to do is have a little baby suffer through all the things you’re trying to keep them alive,” Cogswell says.
“When you see a family unit like that, that are struggling so hard to get a good outcome, you want to go all out and do whatever you can do for them.”
While test results haven’t yet come back, Cogswell says initial results suggest Hannah had congenital alveolar capillary dysplasia with misalignment of pulmonary veins (ACD/MPV). Fewer than 200 infants worldwide have ever been diagnosed with the rare disorder.
ACD/MPV is a genetic disorder where blood vessels in the lungs don’t develop normally, and those that do develop aren’t properly positioned in the alveoli (air sacs), making it difficult for oxygen to get into the lungs and carbon dioxide to get out.
Most babies born with ACD/MPV don’t survive past a few weeks. Currently the only possible treatment is a lung transplant.
“For Hannah, if the diagnosis turns out to be what we think it is, then there was nothing we had to offer that was going to get her better to the point of being able to go home,” Cogswell says.
“The only way you can diagnose (ACD/MPV) is usually post-mortem. And so it becomes a differential diagnosis. You know there’s no real treatment for it, and all you can do is treat all of the other things that it might be masquerading as, and if the patient doesn’t respond to the treatments then you’ve done all that you can.”
The doctor anticipates it’ll be another few weeks before getting Hannah’s test results.
“From our perspective, what we need to do now for Jessica and Isaac is come up with a firm final diagnosis so that we can say, ‘This is what Hannah had, this is what caused her to die. Is there a chance of it coming back in another baby you might have? Or you can go ahead and not worry about this?’” Cogswell says.
Instead of returning to Saanich with their baby girl, Lambrick and Miller came home with plaster impressions of their daughter’s feet and hands. Hannah stayed in Vancouver.
“It’s hard to even think about the future right now because Hannah was in our future. Everything was going to be based around her,” Lambrick says.
They also came home with their memories of Hannah.
“We got to be parents there. We got to change the diapers, and bathe her, and it was special,” Miller says. “Having that little bit of time to be a parent was really important for us. We’ve been wanting to be parents for a long time now, and I’m just glad that we had that time with Hannah.”
Keeping Hannah’s memory alive
Early in the grieving process, Lambrick, 29, and Miller, 28, acknowledged they weren’t mourning in a way that made them felt comfortable. That led to their idea to fundraise for BC Children’s Hospital in perpetuity, in the name of Hannah.
“We had a lot of energy being put out there, but it wasn’t good energy. It was more like, ‘Why? Why us? Why her? Why did she have to go through that?’” Lambrick says. “Isaac came up with this idea to raise $10,000 in Hannah’s name for the pediatric intensive care unit.”
In less than a week, they reached that goal through donations from family, friends and complete strangers.
“We’re going to raise money in Hannah’s name for the rest of our lives,” Lambrick says. “It was such a crappy situation we were in, but to have something positive come out of it makes us feel a little better. We’ll feel that even though she had six days, she made a huge impact.”
Dr. Arthur Cogswell says he’s touched that Lambrick and Miller are raising money to help other children and families in similar situations.
“Your heart goes out to them. The fact they can rally around that point and say, ‘Hannah’s gone, but in her memory we’d like to help out other kids,’ is wonderful,” he says.
To donate to BC Children’s Hospital in memory of Hannah Miller, visit tinyurl.com/mh5sg3p.