Fontan explained

The third step in Hannah’s heart surgery plan is what’s called a Fontan procedure. The Heart Centre at Westmead, who Hannah is looked after by, explain it like this…

“The heart normally has two sides, each with a collecting chamber (atrium) and pumping chamber (ventricle). The right side of the heart collects blue (low oxygen) blood returning from the body. This blood is pumped to the lungs to collect oxygen. The left side of the heart collects pink (high oxygen) blood returning to the heart from the lungs and pumps it to the body.

In some hearts, one of the two ventricles may be underdeveloped. In this case the ventricle is considered to be functionally single (and usually receives a mixture of pink and blue blood). In general it is not possible to replace or rebuild an underdeveloped ventricle, so management is focused on making the best use of the parts of the heart that are there. The way this is done when the underdeveloped ventricle cannot be used as a pump is to create a ‘Fontan Circulation’, named after the person who devised the first version of the operations designed to achieve this.

The objective of a Fontan Circulation is to direct all the blue blood straight to the lungs, without going through the heart. The heart chambers (and single ventricle) are used to pump blood returning mainly from the lungs to the body. Once the Fontan Circulation is completed it allows close to normal levels of oxygen in the body to be achieved, improving well-being and considerably improving protection against certain complications such as stroke.”

It involves putting a goretex tube in to redirect her circulation like this…

Normal heart

For Hannah, this will be the most efficient way for the side of the heart that she has (the left) to function. It should give her back usual energy levels, and the best prognosis at living a long life.┬áIt’s not an easy operation, it lasts more than 5 hours, but it is one with really good outcomes and they do it fairly regularly for a range of congenital heart conditions.

We have met with Hannah’s surgeon and are now waiting to see when the surgery goes ahead. We expect she’ll be in hospital for 2-3 weeks, first a couple of days in ICU and then time on the ward. One of the common after affects of this open heart surgery is fluid retention around the lungs and abdomen, which can influence how long it takes kids to recover.

From chatting to our surgeon, this is a harder surgery to do and recover from than the two Hannah has had already. But she is a good candidate for it, generally healthy and her recoveries for the last two have been smooth which all bodes well.

In all this we are keeping a realistic expectation that it could be delayed (due to no ICU bed or another child deteriorating faster than Hannah). Thanks for continuing to pray and support us during the waiting!

You can read more about the Fontan here or here.

Please pray for…

  • Her surgeon, cardiologist and cardiac care team who are overseeing the surgery, for wisdom and energy for them in these long complex operations.
  • That we would take our anxiety to God in prayer, knowing he is in control and his timing is right.
  • For wisdom loving Hannah and helping her understand and process what’s going on and why, especially as she recovers.

Trust in him at all times, you people; pour out your hearts to him, for God is our refuge. – Psalm 62:8

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Another step closer to Fontan

A couple of weeks ago Hannah’s heart catheter went ahead smoothly, so smoothly we didn’t have to stay overnight in hospital! She was first up that morning, which meant a super early start, but Hannah seemed to enjoy the novelty of getting up before Daddy and the twins were awake. She even said to me “why don’t we stay at the hospital tonight? We haven’t done that before!” I hadn’t even told her we probably would be staying overnight, but that excitement at trying something new did put me at ease. We had read her book earlier in the week, so Hannah now has some knowledge and language to use about her “special heart” which needs extra help from the doctors to help her grow big and strong.

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Hannah keeping busy while we waited for it to be her turn

The waiting in hospital is never easy, especially when you have a hungry 3 year old (she fasted from midnight). But Hannah did really well, and the waiting room was set up to keep her occupied. Her Godmother Nat had also put together some great activities which kept her distracted from her tummy grumbles haha. And each step of the way things being new helped, she loved lying down in the bed and being wheeled around.

The procedure took a couple of hours, and while I waited I read a really challenging book – “Devoted” by Tim Challies, stories of men throughout history and their Godly mums. I was challenged to think about my approach to being a mum, and whether I truly trust God for whatever lies ahead for all of my kids. It was a timely read!

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Even Hannah’s pillow got a hospital band!

After a couple of hours she was back in recovery and on the ward, and her intrigue about the monitors and cords she was attached to quickly turned to frustration at not being able to move around. She had to lie flat for 4 hours to make sure the blood flow resumed normally, particularly to her leg after they went in via the femoral artery in her groin. To stop the bleeding, that had a small pressure balloon on it, which they slowly released air from over the afternoon.

While I was waiting with her I had time to reflect on how much harder the bigger surgery will be with helping her through recovery. So it was timely that a clinical nurse consultant came to visit to talk to me about that very thing! Turns out the heart centre has a team who work together to help families and the kids prepare for the Fontan surgery. I’m not sure exactly what this will look like yet – but it involves the physios, OT and psychologists / social workers. Helping us prepare Hannah for what will be days lying down! Eeeek. And for the mental and emotional side of things too. I’m so thankful that they have thought through these things and that they’re not just concerned with the physical aspects of the surgery and recovery.

But most of Hannah’s frustration at lying down dissipated when she was allowed to sit up and her dinner arrived. I want to bottle up her excitement at having dinner in bed, as it’s the only thing she’s told people about since! “Did you know, I got to eat dinner IN BED!” and “Daddy will think this is SO funny, that I got to eat dinner in bed!” Ahhh to be three. And then it was home time! She spent a week on limited activity, but wasn’t bothered by the bruising on her neck or groin which have most faded now.

Her catheter surgeon was happy with how the catheter went, they were able to collect all the information they needed, and her heart seems suitable for the big surgery to go ahead. And after meeting with the surgeon who operated on her when she was a baby, the plans for her Fontan are in place. It is tentatively scheduled for the end of this year, but we understand it can be pushed back multiple times.

IMG_6349The other thing we brought home was some extra Heart Beads to add to Hannah’s long string. There’s one for the catheter, plus the blood test, hospital admission, having the monitors on, the echocardiogram etc and even one because it was a “very brave day” haha. Hannah doesn’t really understand these yet, but I think they’ll be a helpful way to explain her journey to her when she’s older. I’ve written about them previously here.

With us, please…

  • Give thanks that Hannah’s heart catheter went smoothly and she has mostly positive memories of being in hospital.
  • Pray for wisdom for her surgeon and the heart centre team in planning her big surgery, and for us in helping Hannah process what having a special heart means.

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. – Romans 15:13