A Young Mother’s Experience:

I was aware that something was wrong when Hannah was 24 hours old. On being discharged from the hospital we had been given a checklist of symptoms that required immediate contact with the hospital. In the past 6 hours Hannah’s nappies had become offensive to anyone with a nose in the surrounding neighbourhood! Following the hospital’s instructions we made contact. I explained our concern, the midwife remembered me:

“Oh yes, you were the mummy that was very reluctant to leave the hospital.”

I reminded her that we were discharged before my daughter was even 11 hours old.

“Well don’t worry mum, some babies are just smelly.”

So we commenced 5 months of life with a very smelly baby. Unfortunately, further symptoms developed over coming weeks. Hannah became very unsettled, appearing in constant pain, bringing her legs up to her stomach and screaming for hours, then entire days, and nights. We raised this with the health visitor and whilst I suggested the possibility of a dairy allergy, reflux was diagnosed. As I was breastfeeding, Hannah was prescribed an antacid several times a day. There was no improvement. A stronger drug was then prescribed at the maximum dose, with no improvement.

At 12 weeks we attended a vaccination clinic on a Tuesday. Following yet another sleepless night and 6 hours of constant screaming, we arrived late. Hannah continued to scream, unperturbed that we were in a public place. The other parents patiently waiting with their content babies insisted we go first, even though we arrived last, as Hannah was obviously distressed. I felt uncomfortable about jumping the queue and nonchalantly stated we were fine to wait, Hannah was always like this. Unbeknown to me, the Health Visitor was standing behind me. She asked me to come through to the clinic and then asked if Hannah really was always like this. Stunned, I looked at her and replied

“Of course she is, I told you this.”

“Tell me again” she said.

Hannah’s dose was doubled.

That Friday the Health Visitor called to the house. Hannah had been awake most of the night and had been screaming since around 8am. It was now midday. The Health Visitor offered to hold her, trying everything to calm Hannah down. Nothing worked. A small part of me felt elated. The Health Visitor left after an hour, advising she would arrange an urgent appointment with a paediatrician for further medication.

The following Tuesday I waited outside the paediatrician’s office at the hospital. Hannah was in fabulous form, content to sit and watch the activity of the hospital. The paediatrician called us in to his office. Without even a glance at Hannah he turned to me and said:

“I have just one question for you, how does she feed?”

Having prepared myself to share all of Hannah’s symptoms, I grappled to answer his question.

“Her feeding is starting to improve.”

Before I could finish my response the paediatrician whipped out a Dictaphone and started dictating his notes, which included a diagnosis of “so called silent reflux” and “mother has been advised to burp baby regularly throughout the bottle”. Stunned at his rudeness I interrupted to advise that Hannah was not bottle-fed. He resumed his dictation with the correction to breast feeding. He then rose to his feet, opened the door, signalling the consultation was complete. I stood, then asked if Hannah should continue her medication or if that would be altered, he advised me to discontinue it, as it wasn’t necessary. I asked if she could have a dairy allergy as my brother had one. “Of course not,” he replied. Concerned I then asked him what I was meant to do as Hannah screamed each day. He turned to me and patted my shoulder, saying:

“This may sound patronising, but sometimes mummy just can’t fix it. I’ll review Hannah in 3 weeks at my other office. In case you’re wondering why I didn’t see you there today, it’s because I’ve afforded you twice as much time here today than I can there.”

We left his office in under 4 minutes.

Hannah was prescribed  a different drug the following week through the Health Visitor. There was some improvement. Exhausted and overwhelmed, in mid December my husband and I agreed we would reluctantly start giving Hannah a bottle at night to allow me the chance to get a few hours sleep. Hannah became increasingly worse. I telephoned the GP’s office the minute they re-opened after Christmas. The GP listened to my concerns then said he was unwilling to prescribe anything more until she was examined. He squeezed us in that day, and asked me to share all of Hannah’s symptoms, no matter how insignificant they appeared. Relieved I told him everything: the nappies, diarrhoea, difficulties feeding, constant screaming, vomiting, eczema, and now the raspy breathing and wheezing. The GP asked what I thought was wrong, I said I thought it may be a dairy allergy as my brother had one. The GP agreed and said we needed to immediately remove all dairy from her diet and mine.

Within 48 hours Hannah had transformed. She was smiling, content, cuddly and for the first time taking in her surroundings and exploring her body. I knew from the first day there was something wrong. Within weeks I had identified what it was. However, I handed my trust over to the professionals, and in the process forgot to trust my instinct, and have the confidence to assert that when it comes to my daughter, I am the expert.

Used with permission

Note from Val:  We encourage you to always seek medical advice if you are concerned about your child’s health. But remember that you as parent intuitively know your child. Ensure that medical practitioners are listening to your experience and your concern.