Registered Charity 1183086

“Liam was born at 33 weeks he cried straight away, was lovely and pink and at just over 5lb was considered a decent weight for a preemie. Liam is my 3rd son and I have unfortunately experienced a very traumatic premature birth, resuscitation and extended NICU stay previously. Liam’s weight, and colour at birth had lulled me into a false sense of security that his early birth wasn’t going to be as traumatic for us as a family.

Breast feeding did not faze me. I had fought hard to BF my first born throughout his NICU journey and beyond, and I had fed my second son up to 8m also. I knew how hard it would be but also had experience on my side knowing that I’d done it before, and I could do it again. After a few days an otherwise healthy Liam was not gaining weight, as he was vomiting minutes after every single feed. With no other suspicion around Liam’s health, I had nurses discussing my latch, supply and technique. I knew that the feeding was going well, as I had experienced breast feeding twice before, and I had no concerns over his latch or technique. My concerns were around the consistent vomiting he was experiencing, I knew this was the reason he wasn’t gaining any weight.

much and for so long.

The team supporting us decided to perform a tongue tie snip as he had a mild tongue tie, but I honestly didn’t believe his tongue was affecting his feed’s. I agreed for the procedure to go ahead, because as with any child you want to do whatever you think will help. Unsurprisingly the tongue tie snip changed little about his weight or vomiting, and we moved on to tube feeding, in an effort to be as accurate with his intake as possible.

At last I thought, now they’ll see that my supply is fine, he’s swallowing fine, and still his feeds came up instantly. The team decided to reduce the rate and volume he was receiving over a course of weeks until eventually he seemed to tolerate his feeds a little better in their eyes. He did put on some weight, and we eventually came home.

At home Liam was sleeping really well, but was so unhappy when awake, and the vomiting continued relentlessly. For weeks this was our reality, HV’s stopping by mentioning he isn’t smiling yet, and I in turn mentioned his large head, large and bulging soft spots, and how I could feel his skull moving beneath my hands when holding him. The HV didn’t really make much of their findings, maybe they didn’t know any better. I didn’t push any harder because I didn’t know much better.

This was our life together for 5 months. I loved him dearly, but he was so unhappy and sick when awake, his head was so heavy and I found it so hard. All of it. I took Liam to the GP, his head was measured and found to be very big, but the GP just brushed this off as a “normal” bigger head size for a premature baby.

Not long after this I had taken my middle son to a different doctor’s appointment, where Liam began screaming. I asked the doctor if he minds if I feed him to help calm him down and then I begin to nurse removing Liam’s hat so he’s not too warm. Having accepted this as our normal I was taken aback to see that the doctor’s eyes had begun to widen. He asked me “Does he cry like this often?”
“Yes” I said, “he’s a really fussy baby but he sleeps like a dream.”
He looked me straight in the eyes and said” that is not good. Would you mind if I took a look at your baby?”

I handed Liam to the doctor, and watched him examine him, and then the doctor said he’d like to take him down the corridor for an ultrasound scan. Within 30 minutes of that scan, I was in an ambulance to our nearest A&E where I heard the word hydrocephalus for the first time.

Liam is now 6, and thriving, playing, fighting and enjoying his life with us and his brothers. Sure, we have had so many scary moments with shunt failures, and other complications but the good times we have far out shadow the terrible times. I have had nearly 6 years now to reflect on our journey and here are some of the things that I have personally learnt:

  • Newborns are not meant to sleep as often as he did.
  • You shouldn’t be discharged from a neonatal unit without a head circumference measurement
  • No, big heads aren't “normal for a preemie”
  • Sunset eyes are not my newborn “just trying to focus”
  • Hydrocephalus is as common as Down syndrome
  • A CT scan or ultrasound scan of his head after his birth could have saved him months of pain and brain damage.
  • I have since learned that at the time, the cut off for a preemie being given an automatic head CT is 32 weeks. Had Liam been born 2 days earlier he would have automatically been scanned, which could have changed our story completely.

I truly believe if the health professionals involved in Liam’s care had known more about hydrocephalus, its prevalence in newborns (especially preemies), and the significance of head circumference measurements my would have suffered so