The tot who can't eat a crumb

Holding my newborn bub in my arms, I was over the moon. Lola was gorgeous.

With three wonderful boys, Koby, seven, Lachlan, six, and Mason, four, my husband Stephen, 30, and I were delighted to be having a girl.

‘She’ll be our little princess,’ I smiled as my eyes filled

with tears.

The boys were excited too. ‘We always wanted a sister!’ they told me.

I went into labour at 35 weeks and Lola was born by caesarean a few hours later.

She spent two days in neonatal intensive care because she had some fluid on her lungs.

But she’d only been discharged a few hours when she was rushed back with jaundice.

So when we were finally home and settled, it was a big relief.

The boys were fascinated by their little sister and loved to help me with her.

But straight away I noticed something was wrong.

Her little tummy was constantly swollen and she was always sickly and irritable.

Her bottom was very sore and sometimes there was blood in her stools.

I was constantly having to change her nappy.

But worst of all she would scream out in pain. ‘It’s okay, Mummy’s here,’ I said, holding her. It was the only thing that calmed her.

Some days I cried with her. It was awful to watch my little girl suffering.

She was constantly in my arms, and I started to feel guilty that the boys were missing out on my attention.

One day she went through 40 nappies.

At first, I thought she had colic or was struggling with digestion because she was premmie.

We had visits from the midwife, but when Lola was 19 days, I took her to see a GP, who referred her to the hospital.

They ran tests and checked to see if Lola’s bowel was blocked. But everything came back fine.

‘I just want someone to tell us why she’s sick,’ I said, cradling a grisly Lola.

Over the next few months we went back and forth to the doctors.

One suggested she might be allergic to baby wipes, so we started using water.

Then they thought she was lactose intolerant. I stopped eating dairy so I could continue breastfeeding her.

But she was just as sick. One day she went through 40 nappies.

Next I cut out soy, but it made no difference.

Our beautiful little girl was still suffering.

When she was five-and-half-months old, I decided to give her some baby rice.

If it’s my breast milk that’s upsetting her then she might get better when she’s weaned, I thought.

But the rice triggered a horrible bout of diarrhoea.

It was upsetting but I also knew that sooner or later Lola would need to eat solid food.

She couldn’t drink breast milk forever, and besides, it seemed to be making her ill.

So a few weeks later I tried baby oats.

As she went limp and floppy, I was terrified.

As I nervously fed her the spoonfuls, I desperately hoped she wouldn’t be sick.

Please let her have a break, I thought.

But Lola’s reaction was terrible.

Two hours after she’d eaten, she started to vomit constantly.

She retched again and again, so often that she started to spasm.

Her little body went into shock. As she went limp and floppy, I was terrified.

I called an ambulance in tears. But Stephen had rushed home and arrived first.

‘We have to take her to the hospital now, ‘ I cried. ‘This can’t wait.’

We jumped in the car and raced to the Children’s Hospital at Westmead.

Lola’s condition was stabilised but we were shaken by how extreme her reaction had been.

‘It was just a few oats,’ I said tearfully. ‘What’s wrong with our girl?’

Fortunately, we finally got some answers.

Lola was referred to an allergist, who diagnosed her with food protein-induced enterocolitis syndrome (FPIES).

It’s a rare condition that usually affects babies and small children.

If they eat a trigger food, they suffer a violent gastrointestinal reaction around two to four hours later.

‘There’s no treatment,’ he explained, ‘But most children do grow out of it.’

In the meantime, we couldn’t let a crumb pass her lips. If she went into shock again, her life could be in danger.

It was a relief to have a name for her condition, but hard knowing there was nothing we could do but wait.

Some children with FPIES only react to certain foods, but Lola can’t eat a thing.

At 15 months, she is a bouncing bub, but still only drinks breast milk.

To minimise her reactions, I stick to a very strict diet of fruit, vegetables and meat.

There’s no way I could deprive myself of so many foods if it wasn’t for my child.

In March she had a nasogastric tube fitted, which feeds her nutrients in a special formula.

Because Lola’s reactions were so severe, I’m very careful to keep the house spotless.

I also have to be on constant alert when we’re out and about, or on play dates.

A sticky hand or bit of dried food could be catastrophic.

I feed the boys a normal diet, but they know that any stray crumbs have to be cleaned up straight away.

After all, one tiny bite could be devastating.

When we all sit around the dinner table eating, Lola mimics us and puts imaginary food in her mouth.

It breaks my heart that she has to miss out.

In time, we’ll introduce new foods to her in a clinical environment, to see if they’re safe for her.

I can’t wait for the day Lola tucks into a bowl of pasta or a slice of birthday cake with her brothers.

Until then, I’ll be keeping a very close eye on our special little princess.

What is FPIES?

FPIES usually only occurs in babies and very young children.

Sufferers experience an allergic reaction to food which causes the intestines to become inflamed.

Symptoms include extreme vomiting, diarrhoea, blood in stools followed by severe dehydration.

Dairy and soy are the most common triggers but some children can also react to cereals, rice, and certain vegetables and meats.

Children can stop showing symptoms by the age of three or four.

For more information, see www.allergy.org.au

Originally appeared in that's life! issue 23, 2016