When biologist Andrew Holding's new baby stops feeding, his scientific instincts are put to the test.

Andrew Holding is a Senior Research Associate at Cancer Research UK’s Cambridge Institute and a Fellow of Downing College, Cambridge. His research programme brings together his experience of cutting edge mass spectrometry, DNA and RNA sequencing techniques with computational biology to investigate the function of the nuclear receptors. Andrew has worked on many science outreach and public engagement projects including founding and organising Skeptics in the Pub in Cambridge, which holds monthly talks by various speakers with the aim of highlighting the application of critical thinking and scientific method.

This story originally aired on July 12, 2019 in an episode titled “Concern: Stories about being worried”.

Story Transcript

In 2012, Kim, my wife and I were expecting our second daughter.  Kim’s pregnancy had gone fairly well.  There were few complications but nothing serious. 

I had prepared by reading every book, every paper I possibly could.  I probably, at that time in my life, knew more about babies, childbirth, what was going to happen than I ever had before and will ever do again.  And that, as a scientist, is how I deal with these things.  I learn as much as I can so I’m prepared. 

Now, my wife was supportive of this.  She's a mathematician.  She now works in finance.  Her job is to distill down information and to then make predictions about what’s going to happen, so she found it useful to have someone to provide that bit of information.  I was there as a convenient data source and also to provide the odd hug. 

Now, we’d done this before as well so I knew kind of what we’re going for.  I had experienced some sleepless nights both from Lottie and from my time as a PhD student.  I have a sterilizer ready.  I had the child seat ready.  I had everything ready, even the huge pile of newborn nappies. 

On the 23rd we came home with a new child and we settled in.  Now, those first few weeks with a newborn child some people say are boring.  Boring is good.  Boring means your baby is sleeping when it’s meant to sleep, using his nappy when he's meant to use his nappy, eating when he's meant to eat.  Boring is good.  Boring is normal.

Now, Alessandra wasn’t exactly the same as her sister.  I had this idea we would follow the same protocol and the same things would happen and we’d get the same results.  Lottie had been the most content and loving child you could have.  She was so easygoing.  Now, Alessandra was a very needy child.  She needed her mother.  If she wasn’t feeding or sleeping, she had to be cuddled.  It was gorgeous but it left her mother exhausted. 

I helped where I could.  I cooked food, I took the kids out to the park, I changed many nappies but I couldn’t feed her, I couldn’t be her mom. 

About two weeks after Alessandra came home, I came down from the upstairs and walked into the kitchen and Kim was there.  Alessandra was on her shoulder and it was a beautiful sight.  Alessandra was just curled up in a calm and relaxed way that I hadn’t really seen before.  If you ask me now, I can tell you that she had the tiniest of baby smiles on her face.  If you spend any time with newborn babies you know that they can’t really smile.  They just only get the curling up the tip of the lips.  It is a special moment. 

And her mother Kim is just starting to relax.  Then I asked a question.  As I asked it, suddenly my gut clenched.  It’s a simple question.  “When did Alessandra last feed?” 

Then there was a pause because both of us, sleep-deprived, not really aware what’s going on, realized it was probably a bit too long.  Then we started to try and work out what had gone on, where had we been, what had been happening during the day, and we realized it had probably been most of the day. 

I went over to my daughter and I put my arms under hers and lifted her off her mother.  As I did, her arm just slipped down her mother’s shoulder and fell to her side.  All that energy, all that fighting, all the way she would have screamed if I took her away from her mother before was gone.  She was breathing but she was absent. 

Now, what came next should have been obvious but you don’t immediately want to accept it.  It’s like waking from a nightmare except reality is worse than the dream.  Then you accept, you know what needs to be done.  And my pulse started to race. 

Now, I have no memory what happened between the moment I made that decision and the moment I am marching into Addenbrooke’s A&E with my daughter in a car seat trying to balance that need for attention with that need to protect my child.  We get diverted into the Pediatric A&E and we sit down, and it could have been ten seconds, it could have been ten years.  We wait. 

A pediatrician comes over and he carefully takes us over to the beds they have there.  There’s this pale green bed.  And my daughter, I place her on this bed and she's so tiny compared to that vast expanse.  She's curled up.  That newborn nappy, which is tiny, dwarfs her. 

The pediatrician checks, tries to see if he can work out what’s going on.  He does the basics and he decides there's a possible infection so decides to take a lumber puncture.  He picks up the smallest needle I've ever seen in my life, it’s like a hair, and he tries to pierce in between the vertebrae and the spine.  As he does this, you hold your breath, too scared to even breathe because you might distract the highly skilled professional who knows exactly what he's doing.  And he fails.  He tries again and still he can’t reach any fluid. 

This tense moment, followed by a deep breath, happens, 3, 4, 5 times.  He then concedes it isn’t going to happen.  He admits our daughter to the ward.  Except he can’t admit an infectious girl to the neonatal ward because there's some very sick children there already and we don’t need to add to that.  He can’t admit her to the baby ward because that’s full, so we get directed towards the children’s ward. 

We walk in.  It’s late at night.  I’m looking around in this little enclave of light within the darkness but most of the people have gone to bed.  We go to our bay and I sit down and Kim sits next to me.  We put our baby on this bed and I just see this blue stretcher surrounded by yellows and greens and she's still, despite her being smaller than the last one, looks so fragile and so tiny. 

We sit and we don’t talk because we both know what the other wants to say.  We both want someone to say it’s going to be okay, but we both know it might not be.  We both don’t really know what’s going on.  We've got no diagnosis.  We've got no ideas.  I've got no understanding of what’s happening.  So we sit there in silence for an hour, maybe two. 

Then I have the hardest decision in my life.  Lottie is waiting at home and I have to go and take care of her.  And one of us has to stay with my daughter.  It’s a hard choice but it’s also not a choice, because Kim wants to feed our daughter if it’s possible and I can’t do that. 

So the decision is made.  We get up and I leave.  I leave my wife and child alone in the hospital.  I head home, I put Lottie to bed and she's too young to really understand what’s going on.  She's sleeping on the bedroom, she's happy enough and I go sit on my bed and I put out my phone and call Kim. 

It’s not getting any better.  Alessandra has started to have seizures.  Kim is worried.  The nurses say this is normal, but of course this isn’t normal.  My wife doesn’t know what to do and all I can say is, “Well, take notes.  Write down when it happens.  Take data.”  The scientist in me speaking, trying to somehow control the situation. 

Now, I head in with Lottie for the next few days but it becomes a blur.  Time is meaningless.  Faces come and go.  You start to recognize the shift patterns of the rotors, but nothing is changing. 

On about that second day, I looked at Kim and said, “I need you to take Lottie away for a moment.”  She protests then she accepts.  And I sit down over my daughter’s bed and I have a first moment I've ever had alone with her.  I try to reconcile if that can also be the last. 

I start to grieve.  I start to cry and my tears drop down onto her bed and she's laying there so vulnerable, tubes and monitors on her, and I have no answers.  I have no diagnosis.  I have no knowledge of what’s going to happen.  And as I grieve, I realize every single thing I planned, I wanted, I dreamed, it’s all wiped out.  We’re just living to the next day. 

Time kept moving but, as I say, normal has changed.  Slowly there were hints.  The oxygen meter may be taken away or they might just be a little bit more comforted about her glucose levels.  But we just crept to that day when, eventually, they discharged us.  No answers.  No control.  No understanding. 

We took her home.  But then every milestone wasn’t about her success.  It was another data point, another question, was she going to be okay?  This is a girl who lost complete control of her body temperature, her sugar levels, her breathing.  She’d had seizures.  What harm had it done?  And everything became invested in that. 

Seven years later, every spelling test she passes is a success for her to getting back on that path.  And every maths test she failed is a question if she's going to make it.  It’s like an exponential decay.  A process which slowly decreases, slowly turns towards zero but never actually gets there.  Thank you.