My Cranio-Child

June 4, 2015

704423_10151233565723138_605851805_oMy third son was such an easy birth, 9lb 13 oz and not a stitch.. think I was cavernous by then. (click here for explanation)

I had been robbed of an easy postnatal experience on baby 2 because of his heart condition and subsequent stay in Crumlin hospital. I was so relieved to see Rian’s pink colouring and for the nurses to proclaim him perfect. He latched on beautifully and was so placid. He was the darkest of my 3 boys with sallow skin and dark hair, at last the Turkish genes stepped up.

I was changing his nappy in my hospital bed (breaking all the midwife rules) when I noticed his willy (penis is too grown up a word for a little baby) was odd. I called a nurse over and asked her was she concerned. It appeared to have been circumcised and was bunched up looking. A doctor came to visit and diagnosed a hypospadias. He wasn’t peeing from the tip of his penis but from close to the base (where willy meets testes) and it would require future surgery.

After the heart thing I didn’t think this was too serious an issue and I rang my husband who was almost inconsolable. I guess it takes having one to appreciate the potential pain.

531975_10151234084278138_1718372287_nAnother thing I asked every nurse and doctor that passed was why was there a ridge down the middle of his head. His head had a pointy look and if you felt the middle of his forehead, there was a pronounced ridge. All the professionals asked was he forceps? I answered no and they explained it away saying it’ll rectify itself as he grows.

 

664967_10151252971113138_1920522816_oWe got home and the chaos of 3 small kids engulfed us, 2 in nappies. The health visitor called a few days later and asked if I’d any concerns? I commented on his head and she said it was odd but it’d probably sort itself but to put my mind at rest she put me on a waiting list for a specialist.

At Rian’s 6 week checkup, I asked the nurse about his head and she called the doctor who again dismissed it as the baby’s head settling after birth. Every time I held my baby, I rubbed his forehead, hoping to feel some improvement and as the months passed, my unease grew.

At 5 months we had our appointment with the baby head specialist guy (his technical title), he told us it was probably nothing but because he wasn’t 100% sure he referred us to Dr. Sinead Harty in Drogheda.

1014604_10151570356043138_696661106_o 2013-07-30 16.12.03In the meantime all three had gotten chicken pox and we dealt with that horror. A few weeks later we went for our appointment in Drogheda. We had to bring Koray, our then 2 year old who had gotten the worst dose and was covered in scabs. In the waiting room my main concern was him freaking out the other parents and I wanted to roar, he’s not viral. It was our turn and we met with the nurse who examined Rian and took a medical history. She then called for the doctor. Dr, Harty entered the room by saying “ let me have a look at this triangular headed baby” . She started talking to the nurse and called me over and said look at his head from an aerial view, it’s very triangular. She said she had just diagnosed another case and it was called trigonocephaly. I was relieved that we had a name and asked what next? “A helmet“? “No, he’ll need surgery.”  “What? something small”? I asked getting nervous. “No it’s a major operation” she answered frankly and said she would be referring us to a craniofacial specialist in Temple Street called Dylan Murray. We left her office as if we were sucker-punched. We barely spoke the whole way home and my cheeks were wet with tears I didn’t know I’d shed. At one point in the journey Ossie said, he’s not having an operation!

That night in bed I went crazy googling everything I could pertaining to Rian’s condition and confused as to how I hadn’t found these answers previously. I’m normally so good at a google diagnosis. I watched some youtube videos of kids journeys through surgery and I was a mess. Ossie watched the operation performed and looked horrified. He maintained that he didn’t need it, I knew he would but kept silent for the first time in my life.

2013-11-27 21.32.18After a couple of months we were back to Drogheda for a CT scan that confirmed everyone’s fears. He had craniosynstosis. It’s a condition where the cranial bones fuse prematurely in the womb. Craniosynostosis is a rare condition. It is estimated that one in every 1,800 to 3,000 children is born with the condition. Three out of every four cases affect boys. Surgery is recommended in the first year of life for cosmetic reasons and if left untreated can cause intracranial pressure which in turn can cause learning difficulties and persistent headaches. We got to meet with the craniofacial department in Temple Street when Rian was about 8 months old. Dr. Murray felt his head and said he would definitely need surgery and it was to be scheduled for around his first birthday. The date was eventually set for December the 4th. I spent all of November, bringing him to Santa and indoor play spaces trying to compensate for what he didn’t know was to come.

We arrived at Temple Street early and checked him in and were led to our ward. I thought I was coping fabulously but when I look back on photos of the time I was like a skeleton through stress.  We dressed him in his hospital gown and I carried him to theatre. He fought against the gas  a little then slept. It was heartbreaking and I don’t know how I left him. The operation was to take 5 hours so we decided to go to the cinema to distract ourselves, as sitting by his empty bed would have been too much. We watched The Hunger Games, Catching Fire and it did a great job of numbing the worry. As soon as we left the cinema my stomach was churning and I had to run to the hospital to be sick.

2013-12-04 16.55.02We were told Rian was in recovery and everything went well, he’d needed a transfusion but that was common enough. When our baby was eventually brought back to us, he looked so beautiful and exactly how he should have always looked. I thought that I would grieve for his pre-op appearance but I didn’t at all, I couldn’t stop staring at his beautiful, perfectly flat new forehead. The operation was a success and they had removed the top of his skull and jigsawed it all back together, all under the watchful eye of a neurologist.

The next day, the swelling started and his eyes closed. He had a zigzag scar across his head from ear to ear that was like something out of a horror movie. As awful as it was, I couldn’t help but think he looked like an ageing actor who just had a major facelift.

2013-12-06 21.24.13

 

We celebrated his first birthday on the ward but he was miserable understandably and his eyes were still closed. He got comfort from some of the singing toys that friends and family brought in for him. Four days post op his eyes opened. I noticed him reaching for a snax accurately and I was thrilled. He started to smile too. The next day we were ready to go home and after 5 days with no sleep on a mattress, I was more then  ready. I had to bath him every night and shampoo the scar vigorously to prevent scabbing… not a pleasant task and his skull was so bumpy and felt like egg shells and then apply an ointment. Pain was managed with calpol and nurofen and he was in good spirits. He’s lucky to have Ron Burgundy “a fine head of hair” and the scar would only be noticeable if he shaved his head in the future. We are a year and a half post-op and see Dr Murray on a yearly basis to check how Rian is doing developmentally but as a mother, I know he’s absolutely fine. I have no regrets and want only to raise awareness as my story seems to be the norm rather than the exception. Go with your gut mammys, if you feel something isn’t right, keep questioning!

In case you’re wondering about his willy… the operation is set for 2 weeks so no doubt that’ll require another blog post.20150604_103959If you want to see Rian’s journey put to emotional music, click here

If you think your baby/child has an unusual shaped head or any bumps or ridges there is a fantastic support group in Ireland Cranio Ribbons Ireland run by an amazing lady Elizabeth Kane. She has a facebook page and a closed group if you have any questions. The members have all had children with some form of craniosynostosis and are at varying stages of treatment.

Temple Street have an informative page also, click here.

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14 Comments

  • Reply Jen June 4, 2015 at 3:07 pm

    Jaysus would you ever have a quiet week! Those are some biteable cheeks 😉

    • Reply Aisling June 4, 2015 at 9:59 pm

      What would you do if you weren’t visiting me in some hospital?

      • Reply Jen June 7, 2015 at 10:02 pm

        True, it’s the only time I get out

  • Reply Marianne June 5, 2015 at 1:36 am

    This came at a really good time for me Aisling, thanks xo

  • Reply Crummy Mummy September 1, 2015 at 12:50 pm

    I haven’t heard of anything like this before – it sounds like you’ve been on a real rollercoaster. Thanks for sharing #fromtheheart

    • Reply Aisling September 1, 2015 at 2:49 pm

      Spread the word… September is aawreness month <3

  • Reply Talya September 1, 2015 at 6:19 pm

    Gosh this is my first time hearing about this too – wishing you all the strength for the next steps #FromTheHeart

    • Reply Aisling September 4, 2015 at 8:12 pm

      Thanks a million, he’s absolutely perfect and a delight!

  • Reply Charlene September 3, 2015 at 11:49 am

    Ooh you brave lot! I could feel the rages bubbling up in me with one – we know, we know, we know, we know, we know. If there was one thing I could ask health professionals, busy as they are, it’s please be engaged. At least pretend to be engaged because sometimes when we feel dismissed we stop talking. So glad you found Dr Harty (even if his bedside manner is unorthodox) Thank so much for sharing #fromtheheart

    • Reply Aisling September 4, 2015 at 8:10 pm

      They do make you feel like you’re over reacting but we know when something just isn’t right. Thanks for reading.

  • Reply Julie Dutra September 4, 2015 at 3:57 pm

    I can only whole-heartedly agree with Charlene’s comment – when will healthcare professionals learn to liste to parents and not just dismiss their concerns as undue worry?! I’m so glad it all turned out okay in the end and hope the next operation was fine as well! #fromtheheart

    • Reply Aisling September 4, 2015 at 8:09 pm

      Thanks so much and I’ve just seen a friend go through the exacts same thing, it is maddening! Oh and 2nd op went fine, thanks.

  • Reply The Heartbreak Kid • Fazed & ConfusedFazed & Confused April 1, 2016 at 10:25 am

    […] have spoken extensively about Conall’s struggle with Aspergers and Adhd and about Rian’s craniosynostosis but I don’t talk too much about Koray’s heart condition, frankly because it scares […]

  • Reply We Think There's Something Wrong With Your Son's Heart - The M Word September 7, 2017 at 6:52 am

    […] have spoken extensively about Conall’s struggle with Aspergers and Adhd and about Rian’s craniosynostosis but I don’t talk too much about Koray’s heart condition, frankly because it scares […]

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