Heart to Heart: Our Story

Toby was born a happy healthy little boy with such a great love for life and remained this way until he was around six months old.

Toby at six months

Where It All Began

At six months old he became unwell with a cough. We thought it was just a cold, as you do with children. After two weeks we though 'this isn't right.' We took him to the doctors who told us his chest was clear and it was probably taking it's time to clear up. Fast forward another week and the cough was still there! Back to the doctors we went! This time the doctors decided that he was Asthmatic and put him on inhalers... Let's just say they didn't help!

Third time lucky we thought.... Little did we know that this was the doctors appointment that would change our lives forever!

The doctor did the routine checks; temperature, fine. Ears clear. Throat clear. Chest, slight sign of chest infection. The doctor then looked at me straight in the eyes (anyone who knows me knows I am not an eye contact kinda person) which un-nerved me but the words that followed.... well, lets just say we were not at all prepared for. The doctors gaze shifted between Daryl and I while she shifted the stethoscope around Toby's chest, her gaze then returned back to me who by this point was hanging off my chair, with a puzzled frown trying to engage the doctor in eye contact in an attempt to maybe read her mind and figure out what was going on. Finally she found my gaze and calmly said "I think I can hear a heart murmur. Would you mind if i called another doctor in just to check?" Well of course we didn't! Bring every doctor in the district in to check! Just confirm it or something!

Well the other doctor came in, our original doctor pointed to where she thought she had

picked up the murmur. Out comes the other doctors stethoscope and almost immediately "yep. There's definitely a murmur there."

I shoot Daryl my best panicked look, then fire one straight at the doctor! The doctor then immediately said "don't worry. Sometimes when younger children get poorly they develop a heart murmur."

I just new there was something wrong. about ten years prior to this my mum had found herself in this situation with my little sister. Heart murmur, nothing to worry about.... Oh wait it was a congenital heart defect that had passed from my mother to my sister. I luckily didn't inherit the devil gene that was working its way through everyone close to me but this has lead to major mum guilt but more about that later!

Endless Appointments and The Diagnosis

Ok. So endless might be a bit of an overstatement but my word! When you have an active 9 month old it feels like it. Lets just say that patients is not a virtue for Toby. By the time the first appointment came round three months had passed. We waited at our local hospital who were running 45 minutes late (again not a long time unless you have a grouchy 9 month old kicking off in his pram). We get called into this tiny little room hoping for an answer. All the doctor did was measure, weigh and check his murmur, again reassuring us that there was nothing to worry about as a lot of children have them but quickly grow out of them (cue my annoyed I want answers face.) We didn't get no answers that visit but did get referred to Sheffield Children's Hospital where we would receive a scan by someone who was specially trained.

Fast forward two months. By this time Toby was now 11 months. Have you ever tried to hold an 11 month old covered in cold jelly down so they can be scanned?! If you have you need a reward! So the scan starts.

We all know that face doctors make when they find something worrying? Well that face was made several times during this scan. At the end of the scan I asked the doctor what she had found. Her response dropped my jaw!

She told me Toby has a VSD. A what?! I know that's what I thought when I first heard that term! VSD is the short way of saying Ventricular Septal Defect. This is a really common heart defect in children and will often go un noticed because they often close on their own by the time the child is two, sometimes a little bit longer. A VSD is basically a small hole inbetween the left and right ventricles meaning extra blood flows though from the left to the right ventricle.

This makes an entertaining sound on the scanners, it sloshes!

A plus side here is that his VSD has about closed now! Yay!

The diagnosis didn't stop there though!

The doctor on the scan then told us Toby has a bicuspid aorta with aortic stenosis. This means that his aortic valve, rather than appearing as three, appears as two due to two of the leaves being fused during development. The stenosis part is where the valve that moves blood from the the left ventricle to the aortas arch is narrow as well! This is classed as serious but can be monitored well until the time for surgery comes. This however is the part of the diagnosis that has given me mum guilt that will last until the end of my days as this is a hereditary issue within our family; my grandma had it, my mum has it, my sister has it and now my beautiful boy has it! How did it miss me?! How has my little boy been so unlucky! Why him and not me?!

Fast forward another month and we go for another scan with a specialist doctor from Leeds General Infirmary's special paediatric cardiology department.

"Sorry mum and dad but there is a third problem." A third?! How is there a third problem?! Is there even space for a third on a heart this tiny?!

The name of this third diagnosis was coarctation of the aorta. Yes another problem with his aorta! This is where the bit of the aorta that carries blood to the lower half of his body is significantly narrow, meaning not enough blood was getting to below his hips.

"This is a problem that should have been operated on at birth. It's urgent but not critical that he receives the surgery." Well I honestly can not tell you about the feelings that flooded over us while Toby got off my knee and went on to play fully unaware of what faces him. At the end of the appointment we were told that we should await an appointment to speak to the surgeon to discuss the details of the surgery.

Fast forward to January this year where we met with the surgeon. The exceptional Ms Alessandra Oggianu- what a woman! Daryl and I hesitantly entered the room not knowing what to expect. During this appointment she was the first and only practitioner to have explained the coarctation at a human level so we knew what it was and what was going on with our boy. Then came the paper work and the signing of the consent form. Its one thing to sign a consent form for your self which mentions the word death but when signing one for your miracle baby its a hole different ball game but at the end of the day we knew it needed to be done!

This May Help You With The Above!

The Cancellations

We first got called up for Toby's surgery in March so we packed the suitcase and somehow managed to get that, a tetchy toddler and a pram on the train ready to go. Unfortunately during the night Toby became rather unwell with some sort of viral thing which means they couldn't do his surgery so we went back home feeling disappointed and grateful all at the same time!

The second time we got the phone call we quickly booked the tickets and began the hole train ordeal only to get a phone call as we reached our train station saying that they would have to cancel it. Luckily our taxi was still there to take us straight back home. This particular cancellation annoyed us the most! It was over before it even began!

The third time we got the phone call. By this point we were not very optimistic about the whole situation. We got there and told that they couldn't do it again! No other reason this time though so we left again!

The Surgery

By the time June was upon us we received the phone call again and of course me and Daryl remained optimistic. We arrived at Leeds General Infirmary. A few nurses came by to see how he was, gave us our key to the parent accommodation provided by CHSF (Children's Heart Surgery Fund). Later in the evening the surgeon came round to check how he was doing, to see how me and Daryl were doing and to inform us that Toby would be going down for surgery at 9am the next morning! It was finally happening! My boy was having his surgery! Safe to say that neither me or Daryl slept well that night! The morning came. My alarm sounded at 6.30am not that i needed it. The alarm woke Toby up so I put him in my bed and just cuddled him. I didn't want to let go. An hour passed so we decided to get dressed just as Daryl arrived on ward with the strongest cup of coffee and to be honest the most needed cup of coffee in my life!

At around 7.45am the anaesthetist came around to chat to us about putting Toby to sleep before his surgery and how they were going to keep him asleep during and ventilated afterwards.

The next thing I remember is one of the specialist nurses coming around and simply saying "it's time."

We squeezed Toby as hard has we could while i carried Toby around the corridor to where there was a team awaiting to put him to sleep. The most traumatic experience of my life.

Holding my sweet baby boy in my arms while anaesthetist held the mask over his face and watching him fall asleep. It was so quick. It only took about 20 seconds. I could hear the clock ticking in the back ground. It felt like an eternity. I cried. A lot. I gave him a kiss and placed him on the table. We were quickly ushered out the room so they could do what they needed to do. I cried all the way around the corridor till we were back at his room. The floor covered in toys he had played with up unitll 45minutes a go and the bed where he spent the last night.

Daryl and I clung on to each other for dear life while we walked to the parent accommodation. We got to the room, sat on the bed and attempted to compose ourselves. We managed to a little bit, just enough to phone our loved ones to let them know he had gone down.

Daryl then insisted we ran across the road to McDonalds for some food. I think I maybe ate one chicken nugget and a bite of one chip.

The hours ticked on. About ten minutes after the four hour point we received a phone call from the surgeon who informed us everything had gone well. Cue tears of joy this time!

Daryl and I literally sprinted from where we were to the PICU. We entered the ward. My heart was in bits. So many tubes. So many monitors. So many machines. There. Right in the middle laid our beautiful baby boy! Nothing can prepare you for that sight!

I asked his 1:1 nurse who told us what all the tubes and medications were for. The nurse then informed us that around 10minutes ago Toby had tried to wake up! Excuse me?! How is that even a thing?! She informed me that she had upped his sudation medication for the time being. I sat by his bedside until the evening. Around 5.20pm. Tobys' arms started twitching, his eyes wearily opened! Nurse Sort this out! It took five of us to hold him and all his tubes down! Where upon they administered two more lots of his sedation medication!

We were not allowed to stay on that ward for obvious reasons. We went down to the parent accommodation and tried to eat. For me again that wasn't very successful. As much as I hate to admit it we slept really well that night knowing he had 1:1 care and he was now on the other side!

My Boy on the PICU

The Recovery!

Daryl and I arrived back on the ward at 7am that morning. We were greeted by Toby! He was sat up in bed looking groggy but able to produce a smile for me and his dad. During the night he had attempted to wake up that many times they had decided to remove his incubation tube. We stayed by his side all that day! By 4pm he was allowed on to the HDU ward meaning he didn't have 1:1 care but it was a bay with three senior practitioners looking after six children. He remained on that ward for two days. He spent most of that time bouncing around at the end of the cot shouting at the nurses and playing on the tablet!

We then returned back to the normal ward. Toby spent a lot of time sleeping because he was till on a lot of pain medication. Toby remained on this ward for four days due to them finding his blood pressure was high but to be fair it had just had the shock of its life going from having to force itself through to being able to flow normally.

Day 7 we were allowed home! Amazing I know!

3 Months Post Op

Up to Now

Since leaving Leeds we have had one follow up appointment at Leeds and two at Sheffield. They have decided to keep him on his blood pressure medication until next August at the earliest. Though in the past month we have had a bit of a to do there! The silly doctor missed or added (literally no idea!) a decimal point in one of his prescriptions meaning he has been receiving ten times less of his medication than he needed resulting in us having an all dayer in Sheffield Children's Hospital and a slight increase in one of his medications.

20th December marks the 6month point post surgery! Looking at my boy unless you look at his scars you would never know what he has been through this year and what he faces in his future!

13th June 2018 will forever remain a date we will never forget.

He is still the most bright, beautiful, and positive boy you could ever meet!

Our Boy Now! What Surgery?

Here are Some Helpful Links:

https://www.bhf.org.uk/informationsupport/conditions

https://chsf.org.uk/keeping-the-beat/?gclid=EAIaIQobChMIs8CksY2M3wIVkeR3Ch3SWgLtEAAYASAAEgJ31PD_BwE

http://leedscongenitalhearts.com/child