Thursday 8 February 2018

The reality of heart surgery. #CHDawareness

It is Congenital Heart Defect Awareness Week! Both of my girls have heart defects and so do I. I told our story a good few years ago....Part one and Part two. I am sharing some posts all about Congenital heart defects this week.

This might be a long one...It's a bit higgledy piggledy, a bit of a mind dump and all over the place. In the past I have stated the facts but never about how I was feeling....It's not a pity party. I just wanted to share the reality of heart surgery....

Before my girls got diagnosed with heart defects I thought there was nothing wrong with them....Looking back the symptoms were always there. Becky not being able to put weight on and Ellie's excessive sweating.....

When Ellie jammed her finger in the door and had the operation to set her fingers straight and they discovered a problem with her heart I didn't believe for one second it was anything serious....I had a "heart murmur" when I was a child and then discovered I had a hole in my heart too.....It didn't need surgery why would my baby need surgery too?....

She did need the surgery & Becky did too! One child with a heart defect was just bad luck....Two meant I had passed it down to them. I felt like I had failed my girls.....I have felt so much guilt over the years. A do gooder once said it might not be my fault, Stu could have passed the faulty gene down to them....If only we could share the guilt but we can't. Becky is not Stu's biological daughter....This is all down to me! The doctors have said it could just be bad luck but the chances are it's hereditary. 

When we arrived at the hospital I was a mess! It was Stu's birthday. I had spent the day breaking down in tears and vomiting. When I am worried I am sick.....It's a birthday he will never forget. 

The odds of two sisters having identical heart defects is so low....The people we had spoke to in the hospital had never known it before...It has happened in the past, just not with the staff helping us. We were rare. I felt like the odds were not in our favour. I really believed I would not be leaving the hospital with both or even one of my girls....

Everything was a blur.....Time seemed to drag but at the same time it seemed to go so quickly. The night before the surgery was filled with x-rays, blood tests and endless questions.....It didn't seem real. 

Taking a child into surgery is awful....I don't know why but the nurses felt the need to show me the bypass machine which would keep my girls alive....I know they were only trying to explain all the scary medical equipment but knowing a machine was doing the work of the heart worried me even more.....

Nothing can prepare you for seeing your child after heart surgery.....I tried to imagine it and it was a million times worse....Full of tubes, wires, leftover blood, choking on a breathing tube and the look in their eyes....Becky was silently screaming for help and there was nothing I could do apart from collapse in tears into a chair that a nurse had put behind me.....

At about 6.30 the next morning....We were staying in the flats for parents of sick children and there was a phone call for us....We didn't know what the phone call was about and feared the worst. The staff in PICU said they would only call if there was something wrong. I was crying before I even answered the phone. It turned out Ellie was to have her surgery that day instead of the next. We weren't allowed to let her eat and had to get to the ward as soon as we could. 10 minutes later my baby was being prepared for surgery. It felt like I was on auto pilot. I really don't remember much about that morning....I think I shut myself off a bit. 

Taking one child for surgery is bad but taking another less than 24 hours later. I don't know how I did it.....Even the porter gave me a look and a hand on the shoulder to try & make me feel better! The support from the staff in the hospital was amazing....I can't thank them enough for that. The nurses in the theatre seemed shocked to see me again and they showed such compassion....

When Ellie was in surgery I was told to go and eat something.....I remember going to the cafe and picking at my food then walking out of the cafe door and vomiting in the bin. (Not my classiest moment) but I can laugh about it now.....

Becky was moved off PICU on to the ward....It was a relief but how could I be relieved when I had another child being operated on?

Time dragged.....Becky was recovering well. Something happened which I can laugh about now but at the time I didn't.....I nearly throttled a clown! Really I did. I don't know if it's the same for all children's wards but the kids heart ward they had these clowns who come round to cheer people up....How was he to know I still had a child in surgery & one in the bed in front of him.....At least when I growled at him to leave me alone Becky laughed. The first time since she came out of theatre! 

One of the lowest points I had was when a nurse came and asked how I was....I cried and cried....There was no cause for my tears apart from being asked one too many times how I was. How do you answer that? One child in a bed in front of me and the other in surgery. The very British thing to say was I was fine. I think I might have said that but obviously wasn't.....

The nurse took Stu and I off to the TV room to just calm ourselves....I don't know how long I cried for but someone knocked on the door and said Ellie was out of surgery. We went to PICU expecting her to be in the same state Becky was. I didn't want to see her. The amazing nurse who caught me when I collapsed with Becky went into PICU first and came out laughing saying we really need to see Ellie....She was trying to sit up and was asking for a drink and crisps. lol

I went from being so low and then so high in the space of half an hour....The nurses on PICU said if it wasn't the rule she had to be on their ward overnight they would have kicked her down onto the ward within hours.....She was doing great, better then great.....

Ellie gave the nurses a real giggle a day or so after her surgery....She was watching Waybuloo on Cbeebies. Those freaky little things that do yoga. Ellie wanted to copy them. That is not advised when you still have wires and drains attached but try telling a nearly two year old that....

The next morning both my girls were on the ward. Six beds to the room and obviously they were in beds in opposite corners of the room....I was rushing between them both. After the previous couple of days it seemed like fun! Ellie was itching to go to the playroom as soon as she was on the ward but Becky was still stuck in bed. She wasn't coughing the fluid on her lungs up enough. We got there in the end and they were cleared to go and play....They were like pigs in poop. hehehe

As bad as things were with us at our lowest point there is always someone worse off than yourself.....There was a young girl waiting for a heart transplant. She had, had leukemia and I can't remember if that or the treatment had damaged her heart. She was only about 2 years old and had been in hospital for most of her life....She thankfully got the transplant shortly after we had been discharged. 

Once my girls were up and about they both recovered quickly and we were home in the time to watch the new series of X-Factor....They did get a bed next to each other eventually.....I was on a fold out chair bed in the middle of them. I hated those chairs.

They were the longest seven days of my life......Ellie can't remember much of it as she was too young. She remembers the fun times. The playroom, watching Cbeebies in bed and that's about it. Becky remembers more. The pain and the fear. I feel so sad for her.

We have check ups every 18 months/two years and they fill me with dread.....Our last one was in October and they still have their leaking valves.....They will need surgery in the future as the leaking valves may cause their hearts to swell eventually but it's not going to be anytime soon.

It is strange. I can't imagine my girls without heart defects....It has made them who they are....Obviously I would never wish heart surgery on them but I guess it makes us special.


  1. Hi Kim,everytime I read a post like this I am struck with a huge respect for the whole family. It's not just your girls that are special, it's your whole family that is special. It is important to share stories like this as not only does it help to raise awareness of what some families are going through, but they make all the difference to a parent who doesn't know which way to turn for comfort... Never beat yourself up about genetics, it's really a pointless exercise.


  2. Sending my love. You are an amazing woman and this is so beautifully written. Xx

  3. oh matey, I just can't begin to imagine how awful it was for you to cope with at the time. I know I felt so lonely and totally terrified when Craig had heart failure. To have to go through this with your babies must be so worrying. You have two beautiful girls and I wish them both a very happy and healthy future. They are little warriors ❤️ :) xx

  4. It all sounds so horrible, but glad you got some support from the staff when you needed it most. The flat is a handy addition to places like this.
    I appreciate the guilt, DD2 had her first operation at 4 weeks old and I wandered the town like a zombie until it was time to go back. She then spent 8 years from 8 yrs old going to the dental school in Glasgow as the medicine I had to give her to keep her alive had massive side effects they did not know about in the early 80's, but no medicine no child so a hard choice made easier by no choice if you get my meaning.

  5. Having that awful wait with one child in heart surgery is hard enough - I cannot imagine how tough that must have been for you with both of them having their surgeries on consecutive days. Seeing your child covered in tubes and wires is so hard and those silent pleas for help utterly break your heart. I can imagine it must be hard for Becky remembering so much more of it than Ellie does. Hopefully it will be a long time before either of your girls need more surgery x