Juniper French entered the world weighing little more than a pound. At 23 weeks, her eyes were still sealed shut and her skin was so thin it could fall off to the touch. She was a wisp of a human, only half formed.
Her parents, who’d been trying for a baby for five years, could not let her die.
Kelley French, then a reporter and editor for the Tampa Bay Times, pumped a carload of breast milk for a child who could not breathe. Thomas French, a Pulitzer Prize-winning journalist and author of the New York Times bestseller Zoo Story, sat by the incubator and read Harry Potter to his tiny daughter while she suffered from an infection in her gut, a blood clot in her heart and fluid in her lungs.
Drawing from their notes and Juniper’s 7,000-page medical chart, they chronicled the fight for her life in their co-written book Juniper: The Girl Who Was Born Too Soon, published Sept. 13 by Little, Brown.
Speaking with The Globe and Mail, the couple explained what it’s like to parent a micro-preemie – and why saving kids like Juniper is worth every cent.
You described everything from how Kelley hit up an acquaintance for a donor egg to the shock of meeting a baby that looked “red and angular, angry like a fresh wound.” What compelled you to write this book?
Thomas: This was both the worst story of our lives and the most transcendent. It existed in the centre of this huge national debate about health care and the ethics of neonatology, and we had access to this secret world.
Kelley: It would have been journalistic malpractice not to write it.
Why did you include the sordid details of your early relationship, including Tom’s infidelity?
Tom: It’s horrible to talk about that stuff in public, and we tried to start the story later. But without explaining what we went through, the story did not make sense. Like when I first met Juniper [just after her birth] and put my finger in her palm and she grabbed on, why I was beating myself up about how weak I was and comparing myself to her strength. Also, it would be very easy for this story to come across as a clichéd movie-of-the-week. It’s important for the reader to understand that we’re real people who are very flawed, especially me.
Kelley: One of the themes in the book is what makes a mother. In order to tell the story of this child being artificially gestated, you needed to know that she was artificially conceived. She was a sci-fi baby, so you had to know about the IVF [in-vitro fertilization] and all these questions about genetics and motherhood and how I came to figure those things out.
At what point did you try IVF?
Kelley: I was 32 or 33. I went to the doctor after six months [of trying to conceive] because I had friends going through this and it tripped an alarm in my head to jump-start the process. I married an older guy [Thomas is 16 years older] who didn’t want to be in a wheelchair at our kid’s high school graduation.
What was your darkest hour in the hospital?
Kelley: There were just so many bad ones because I had all this guilt. I kept thinking, our daughter is going to die and we’re going to collapse into debt and our marriage is going to fall apart and this is all my fault because I wanted a baby and I am a selfish, horrible person. But the surgery [for an infection in Juniper’s gut] was probably the worst, because she was so clearly dying.
Tom: For me, one was the night when we had to decide whether we were going to resuscitate or not when she was born – that is just an impossible decision. The other one, once she was born, was that moment when I realized we might not finish the first volume of Harry Potter – she might not get to hear that Harry, Ron and Hermione were going to be okay.
What do you wish you had known just before Juniper’s birth, when you were forced to decide between letting her die or subjecting her to invasive treatments?
Kelley: The main thing is that parents have so much more power than they realize. In the early days, you just feel helpless – you can’t hold or feed your child – but studies demonstrate the power and influence of supportive parents in [preemies’] long-term outcomes. And the statistics are not nearly as dire as I thought. There was an 80-per-cent chance that Juniper would either die or be moderately or severely disabled. That was a very scary number. But that is not the most useful number because we were trying to decide whether to try to save her or let her die. If we tried to save her and she lived, the odds she could be perfectly fine were closer to 50 per cent.
You explained the neonatology concept of “waiting to declare” – the idea that preemies, once they are stabilized, assert their intentions and their will by either improving or deteriorating. But at the same time, Juniper’s doctors and nurses did everything they could to save her.
Kelley: Yes. At every single point where Juniper was yanked back from the edge of death, it was because a human being was paying attention, and acting on instinct, and saw something that was not on the monitors. I love that about the book – it took all these people to save her life, not just the science.
How has Juniper’s life shaped your understanding of God, faith and destiny?
Tom: An argument can be made that the universe is a random place and that sometimes terrible things happen to people who don’t deserve anything bad. But I simply don’t choose to believe in randomness. I believe in stories and our attempts to find order and meaning from all of the things that happen to us. The NICU was the most powerful affirmation of those beliefs that I’ve ever seen.
Kelley: You can’t look at a baby that’s four and a half months from when they’re supposed to be born without considering some really cosmic questions about when and how does life begin, and where was this child before she was here. I do feel like she’s a miracle but it’s a complicated one – there are so many people who had to make that miracle happen.
Are you worried your story will be used for political ends?
Kelley: Very much. I think it’s perfectly fine for people to know what a 23-week-old baby looks like and what we experienced. But what I fear most is that politicians will try to take our story and use it to get involved in other people’s lives, whether it’s dictating cut-offs for treatment or making laws about abortion. I don’t want my kid to be anybody’s poster child.
What about the argument that resources devoted to keeping one micro-preemie alive could have benefited hundreds of others in need?
Kelley: That’s the first question that people want to raise – at what cost? Her hospital bill was $2.4-million [U.S.], of which the insurance company paid a negotiated rate of $1.2-million. But those dollars buy many more years of life compared to the vastly larger amounts we spend on care for the very old, most of whom will never leave the hospital. NICUs are profit centres for hospitals, which are able to use some of that money for vaccines for poor kids and other treatments. The research and experimentation that happens in NICUs lead to other kinds of progress that helps other people. I don’t feel even an ethical twinge about that.
Could your book give other parents false hope?
Tom: The book makes it really clear that there aren’t any guarantees when you have a baby this small. We chronicle watching two babies die within a few feet away from us. The threat of death was very real and I think it’s okay for parents to know that, and to let them decide how much hope to allow themselves.
Juniper is now in kindergarten. Does she have any lingering health problems?
Kelley: Socially and emotionally, she’s ahead of where she should be. In fine motor skills, she’s a little bit behind. But Tom has the worst handwriting of anyone I know. So is her bad handwriting at age 5 because she was a preemie, or because she’s Tom’s daughter? I don’t know, but she’s doing really well.