Kailer's Story

told by mum


We found out about Kailer’s heart condition when I was 20 weeks pregnant with him, we were sent to Glasgow fetal medicine unit where we went under more intensive scans on his heart where he was diagnosed with transposition of the great arteries we were told to he would have to be put through 2 operations one called a balloon septostomy and the other one which would be the major one called the great arterial switch.

My due date was 1st of October but I was meant to be induced in Glasgow on the 18th of September when I was 38 weeks, but Kailer had other plans. 24th of August as I was sat eating breakfast my waters popped. I was put on a drip to help with the contractions and help dilate me further, I was taken to the labour ward and put on a different type of heart tracing monitor for Kailer as his heart kept dropping.

The midwife’s came in and told me that for both mine and babies safety I had a decision to make, they told me that a section would be the safest option for both me and not to put too much strain on little man’s heart, I agreed and before I know it I was being sat on the edge of the bed and having a needle shoved into my spine. The first epidural failed so they tried another 3 times, after 4 failed attempts they decided it was best to just go for a spinal blocker. The spinal block worked and was rushed to theatre it was one of the craziest experiences of my life I was numb from the chest down I couldn’t see my partner and was worried that I would be cut open without him being by my side.

He was finally allowed in and they began my C-section, at 11:21 pm on the 25th August my world was complete my little boy was born to the world, weighing 5lb 14oz being 5 and a half weeks early I was ecstatic, we were given a Quick Look at him allowed to give him his first kiss and then he was taken straight over to NICU. We didn’t know until the following morning he had his first operation when he was little less than 2 hour old, he had a balloon placed into his heart to keep the valve open and allow his blood to flow properly.

The following morning after I came round I was allowed to go meet him for the first time ever, absolutely nothing could have prepared me for what I was about to see my beautiful little boy was wired up to all sorts of machines with a massive tube down his throat, he looked so blown out of proportion he didn’t look like a new born but ohh my god he was absolutely beautiful.

His diagnosis was TGA (Transposition of the great arteries.) we were told as he was early it would be a few weeks before he would go through the arterial switch, we were transferred from NICU to PICU, this is where things started to go wrong, the first few weeks went fine on the 17th of September we went to sign his consent form for his operation, we met professor Danton we signed the form and went back to the unit to see little man, we went back to Ronald McDonald for some dinner and got the phone call to say his arterial switch had been cancelled as he’d picked up a small infection, he had to be put on an intense course of antibiotics for 10 days.

In the time they were putting lines into him to try get the antibiotics into his body they caused a small blood clot to for in his groin, he was then gonna be put on a blood thinning medication until January 3rd. The following Monday we were again asked to speak with Pro. Danton and this is where we found out Kailer’s small infection was actually sepsis and he was very lucky to still be here, this also caused greater risks in little man’s chances for his surgery.

However the surgery was booked for the next morning and I was scared more than I had ever been for anything, he went into surgery at 9:30am and was the longest day I’ve ever had. We got the phone call around 5:30pm to say operation went well and he was in recovery we’d be allowed to see him within the hour, to our surprise when we went in he had been closed back up defying odds even more. Recover wasn’t easy and we were moved into the cardiac ward, this is where we had the most issues, he kept picking up infections one being a flesh eating bacteria round his open heart surgery wound.

He was put back on another intense course of antibiotics for another 10 days, it was another set back on our journey to get home, we also found out he’d had a small bleed in the brain but everything was ok, we later found out after leaving the hospital Kailer had suffered a cardiac arrest when having a pic line inserted through his neck. However after 11 weeks in hospital we were finally given the all clear to go home on the 3rd of November.

Coming Home!

Since coming home Kailer is absolutely thriving he’s now a healthy 11lbs 3oz baby he’s such a happy content little boy for 4 months he wants to be standing on his feet as you hold him he doesn’t like to sit down he’s very active already for his age, he loves noise and Baby Tv, he also loves to be held and cuddled.













If you have been affected by any of the issues raised in this content you can contact info@chfed.org.uk or 0300 561 0065.

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