On the 22nd of April my two-and-a-half-year-old son, Azariah had his second open-heart surgery. If you have been following my journey for a while you will know that he was diagnosed with a congenital heart defect at our 20-week pregnancy scan and had his first open heart surgery at thirteen days old. We have been waiting for this second surgery since March 2023 and had been given dates that were then rescheduled or cancelled continuously throughout the year causing us much stress and anxiety.

Today we are sitting on the other side of what was a traumatic ten days in the hospital, yes only ten days! The first time around we spent just under five weeks in total in the hospital from his birth to his discharge, so we were prepared to be there for a few weeks. We arrived on the Sunday before for him to have blood taken in the morning. We had all our bags packed and ready to go and stay in the Ronald MacDonald House next to Alder Hey Hospital. That evening we went to a local bowling alley, as it’s one of his favourite things to do, and enjoyed some family time together.

The surgery took almost ten hours, and it was the longest ten hours of our lives waiting for that call to say he was out of the surgery and on his way to the Pediatric Intensive Care Unit (PICU). The horror of seeing your child hooked up to so many machines, receiving so much medication, and having their chest still open is nothing I can put into words. The next few days were difficult, sleep was challenging, and we took every moment to God in prayer. Every next step the doctors planned to do, we prayed about. We documented the journey on his Instagram if you were interested in more details https://www.instagram.com/azariahthechampion/

We didn’t get a chance to see the surgeon who had led the surgery until Friday due to his schedule and our PICU ward had been closed several times during the week due to procedures they were carrying out and emergencies which meant we were unable to get onto the unit. Once we were able to speak with him he gave us the update. They had gone into the surgery with a Plan A and a Plan B. Plan A was going to be trickier and involve more risks but would provide more of a fix, Plan B was a procedure that would require further surgeries. They had been able to do Plan A despite it being trickier than they had anticipated. The surgeon said our son was now FULLY CORRECTED. He could possibly need a smaller intervention at a future date but that is many, many years away and only a possibility. We asked if he could play competitive sports if he wanted to and the answer was yes! We had previously been told this wouldn’t be possible.

By that Friday he was ready to be discharged from PICU onto a High Dependency Ward but there were no free beds, so he didn’t move there until Saturday. By Wednesday they were talking about discharging us to go home! That was much earlier than expected and I was unsure how I felt about that but by Thursday we were on our way home. Ten days after having open heart surgery!

Let me say that we’ve been praying about this and I don’t mean a one-off crisis prayer. We’ve been praying since we knew. Praying, fasting, seeking God with ALL of our heart, mind, body & soul. In fellowship with other believers, under the covering of our church. Being obedient to what God has put in front of us. Stepping out in faith even when it feels uncomfortable. Taking our hurts, and disappointments to God because there have been many of them too. If you’ve been praying along with us, be encouraged. Jesus told us “Whatever you ask in my name, this I will do, that the Father may be glorified in the Son. If you ask me anything in my name, I will do it.” (John 14:13-14) and that’s what we’ve been doing. Thank you Jesus for your healing power. Thank you for being faithful to your word and doing more than we could have imagined. Our little boy has been healed.

If you could see him at home you wouldn’t think he has just been through all of this. If you make it all the way to the end there is a photo of him on the day we came home. Apart from two heart medications he needs to take daily, he isn’t taking anything else including pain relief. Of course, Calpol is on hand if he needs it. The main challenge we have is that he wants to play basketball and football but he needs to wait another four weeks while his sternum and chest wound heals.

Now I want to share the original prognosis we were given back at that 20-wk scan in April 2021.

We were also given the option of terminating the pregnancy at that point. I don’t know about you but the place we are now is not what the doctors forecast. The surgeon said it is fully corrected and no more surgeries, well possibly not until much later in life. Azariah can live a normal life. I can confirm he has no issues with eating or exercise – he doesn’t stop in either area! I am forever grateful that termination was never an option for us.

As hard as this journey has been and I wish it hadn’t been our path we have seen God’s goodness all over it. It has changed us as people but for the better. We have met some amazing people in the heart community who we have had the honour of praying for and becoming part of their journey. There have been so many God moments and so many things we have learned that I am sure it will take us a while to process it all. I wanted to share an update that hopefully encourages you and shows how faith works through some of the hardest things we face.  More importantly, I want to give God the glory for what He has done in our lives. Feel free to share our update with others to encourage them.

Back in that first scan, my husband Marvin felt God gave him the song lyrics “Who has the final say? Jehovah has the final say” and we have held on to that. Ultimately no matter what the doctors had to say, God had the final say.

I am so excited for this next season of our lives and we appreciate those who are on this journey with us, no matter what point you joined! I look forward to sharing more of this journey with you.

Amber x