Our Rainbow Baby had open heart surgery at 13 days old

If you have been following my journey, you will know that back in October 2020 we had a miscarriage and lost Baby J a few weeks before our first wedding anniversary. It was a painful time and I have written several blogs regarding the pain and grief.

Marvin and I decided to try again as soon as we could. Not because we wanted to replace Baby J, because no baby can replace another but because there was no reason not to try again. We had prepared ourselves for a baby and planned for a baby, so we tried again.

I got pregnant quickly and as with my pregnancy with Baby J, I was very sick. I was actually sicker this time as I was vomiting three times a day at least. Physical sickness aside, it was a very anxious time. I was terrified we would lose this baby too and just couldn’t shake that fear. Going to appointments were filled with anxiety, especially scans.

I recall one morning seeing blood during a trip to the toilet. My head went into overdrive, and I just thought it was happening again. I was told to stay at home, rest and monitor it. This felt frustrating, like the nurses didn’t care but fortunately there was no more blood.

With Baby J’s pregnancy, as a family we would excitedly read those pregnancy updates you can get on pregnancy apps which tell you what your baby is doing in the womb at this stage, what parts are growing and developing now. But I found I just could not relax into this pregnancy; I couldn’t read those updates because I didn’t want to know what was happening this time just in case we didn’t get to keep this baby. Marvin and I found it hard to talk about this baby, we found it hard to plan for their arrival, we found it hard to get excited. I felt guilty, like I wasn’t giving this baby the attention it deserved through no fault of its own.

We had decided that we would try to relax once we got to the 20-week scan, and we would let ourselves begin preparing and buying items the baby needed. The scan was the day after my 40th birthday and we were going away for the weekend later in the day.

Filled with anxiety and worry already, the scan was very difficult. We were in there for a long time and the sonographer kept asking me to move into different positions as the baby was not in a good position for her to see what she needed. After a very long time we were told that she just could not get the views on the baby’s heart that she needed and would need to refer us to have a further scan with a cardiologist the following week.

Our weekend away turned into a time of prayer into this situation. We reached out to others and asked them to join us in prayer.

The scan was another difficult one. It took a long time. I felt faint with the heat and having to wear a mask. The cardiologist was so silent throughout it, it was uncomfortable but Marvin and I both took the time to silently pray.

Once the scan was over, we were taken to another room and given the news that would turn our lives upside down. Our baby had a very complex heart issue. The doctor drew us a diagram to help us understand and he presented us with our options. The first option was a termination. The second option was to proceed but understand that baby would require surgery at birth, at one years old and potentially again around 10 years old. We were also offered an amniocentesis test.

I felt like I was drowning. The sound of my heart beating was so loud, I could hear it right in my ears. I was crying. I was squeezing Marvin’s hand. I didn’t want to listen to the doctors’ words anymore. I just wanted to get out of that room where it was becoming difficult to even breath.

But I knew 100% a termination was not going to happen. This was our baby boy (we had found out the sex) and he deserved to live. During the scan while Marvin had been praying, he had got the song lyrics “Who has the final say? Jehovah has the final say” and that’s what we knew, that ultimately God had the final say in this situation. He was sovereign overall, and we trusted Him.

Pregnancy after loss can be incredibly hard. We had been waiting for confirmation at our 20-week scan that everything was ok so we could relax and enjoy the arrival of our baby. Now we had to process this new information which made preparing for our baby even harder. When would we let go? When would we celebrate instead of worry? There comes a time when you just have to let go, when you have to be in the moment and enjoy it.

I made the decision around 24 weeks that I had to let go. I wanted to tell everyone we were expecting a baby. I wanted to get excited. No matter what happened our baby deserved to be celebrated! So we did. We didn’t make our situation known to everyone, but we had a strong circle of prayer warriors who were committed to walking this journey with us and praying for our baby. They received regular updates and were given specific things to pray for. Not letting everyone know was a challenge, because the main statement you get directed at you during pregnancy was “I bet you are so excited!” And yes, we were but we were also terrified of what was to come. While my baby was in my womb, he was safe but once he entered this world things would become challenging for him.

Our faith stepped up to a whole new level. Our desire for God increased and we wanted to see Him glorified in this situation. Now that may sound strange to some, especially if you are not a Christ follower as we are but our faith is what got us through and is still getting us through.

Our baby boy Azariah was born on the 25th August after I was induced 9 days early. He was born via a natural delivery with no further complications, which was an answer to prayer. He underwent open heart surgery at 13 days old at Alder Hey Hospital in Liverpool and we lived in the hospital for almost 5 weeks old until we were able to bring him home. The journey is not over, and it has been THE most difficult time of our lives, but our son is a blessing.

Azariah is our rainbow baby, a baby born after a miscarriage. His name means ‘helped by God’ and we know he was and continues to be. The healing may not have come in the form we began praying for, but over time our prayers changed, and we saw answers to prayer right before our eyes. It was our faith that got us through. I have so much more to tell you about our journey, and I haven’t felt able to share much while we were going throught the thick of it. But I am ready. I never want experiences to just be passed by or swept under the carpet. If they can help one person get through something similar then I want to do that. Please be sure to follow my blogs so you can be notified as I share this heart breaking, faith filled journey with you.

God bless,

Amber x


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