February is Heart Month, a time to raise awareness of all things heart. If you read my last blog https://itsafaiththing.com/2021/11/15/our-rainbow-baby-had-open-heart-surgery-at-13-days-old/ then you will know that our son Azariah, was born with a congenital heart defect (CHD). I shared some of our story in that last blog but wanted to share more in order to raise awareness around congenital heart defects and how we are getting through this.
We set up an Instagram for Azariah https://www.instagram.com/azariahthechampion/ and love sharing his journey there, so please do give him a follow. There is currently a Heart Month Challenge running on Instagram, asking those affected to share a different part of their story each day of February. I thought this was a great time to start really sharing our journey, today will be about the diagnosis.
“I understand that you’re not a CHD parent, so spreading awareness isn’t a priority. But the day before my child’s diagnosis, I wasn’t a CHD parent either”
This was something I saw shared on Instagram and it resonated with me as the day we received the diagnosis was the day that our lives changed. The day we became parents of a child with a CHD.
It was Friday 16th April 2021, the day after my 40th birthday and we had an appointment for our 20wk scan. Later in the day, me and my husband were going away for the weekend to a little retreat cottage. We had a miscarriage before being pregnant with Azariah and this made scans an anxious time. I discovered the word ‘scanxiety’ and that seemed to fit, so although we were anxious, we were also so excited to see our baby & find out the gender. We had been waiting to get to this scan, so we could know everything was ok and we could finally enjoy the rest of the pregnancy sure that we had passed a “safe” stage.
We began to worry when the sonogropher couldn’t get the views on our babies heart. The scan ended with us being told we would need to be referred for another scan at our local hospital and then potentially for a further scan at Manchester hospital with a cardiologist. While we were driving to our retreat cottage, the hospital called and said they would rather send us straight to Manchester for the next scan. This made us think it was more serious than we knew.
Our weekend away didn’t go the way we had thought it would, it became a time to pray about what may be coming on the next scan which was to be a few days later on Tuesday 20th April. We had let some close family & friends know, and asked them to join us in prayer. The cottage was surrounded by countryside with no TV and the sun was shining. It felt like a real blessing to be there while we processed the news, it was like God knew what was coming & what we needed. We spent much of the weekend praying together, reading our bible and worshipping. It really was a very peaceful time, and that was the thing that struck us, we both felt peace about the situation.
On the Tuesday, we headed to the Fetal Medicine unit at Manchester for a scan on our babies heart with a cardiologist, walking thorough the usual scan department, looking at all the other women waiting for their scans, filled with hope and excitement.
The scan was so uncomfortable, everyone in the room was so silent and it was so hot. Baby was not in a good position, and I kept having to move. As we were still in the pandemic, I had to wear a mask which was making it hard to breathe and I felt faint. Both me and Marvin were using the time to pray. Marvin told me later, that while he 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.
“Who has the final say? Jehovah has the final say”Bernice Ansah
Once the scan was over, we were taken into another room, with comfy chairs and paintings on the wall. Dr Gladman gave us the news via a diagram he had drawn for us, this showed several things were wrong with our little babies heart. He had a large hole in the wall of the heart. The two main arteries carrying blood out of the heart are in effect switched position. And the aortic arch was much smaller than the other. The medical terms are below.
♥ Double outlet right ventricle (DORV) is a heart defect where the aorta connects to the heart in the wrong place.
♥ d-TGA is a birth defect of the heart in which the two main arteries carrying blood out of the heart – the main pulmonary artery and the aorta – are switched in position, or “transposed.”
♥ A VSD is a hole in the wall (septum) that separates the 2 lower chambers of the heart (right and left ventricles). VSDs are the most common type of congenital heart defect.
♥ Hypoplastic Aortic arch. A condition similar to coarctation of the aorta, a hypoplastic aortic arch is said to be present when there is a blockage in a certain location in the aorta. Narrowing of the aorta forces your heart to pump harder to move blood through the aorta.
While Dr. Gladman was talking I was holding Marvin’s hand and could feel that I was digging my finges into it. I could hear the blood punding in my ears, I felt like I was drowning in that room, it was hard to breathe. I wanted to tell the doctor to stop talking, to be quiet. I wanted to scream, I wanted to punch someone. What was happening? So many questions. Why did it have to be a large hole?! Why did there have to be more than one problem? This is something you see on the TV, not something you experience yourself. But here we were, having our lives changed forever.
Dr. Gladman gave us our options:
1. To proceed with the pregnancy & understand our baby would need surgery at birth, 1 years old & again at 10 years old.
2. Terminate the pregnancy
3. Have an amniocentesis
We both knew that option 2 was not for us. I told Dr Gladman, that we were Christians and a termination was not going to take place. Our baby was alive right now & deserved a chance to live. We didn’t go for option 3 either, the result of this test would make no difference to our decision to fight for our baby boy!
We had to walk out of the hospital back through the usual scan department, where other parent’s lives were filled with hope and excitement, not knowing the news we had just been given. My first desire was that I need to around faithfilled people to process this, so we called our pastor and his wife and asked if we could come over. They knew where we had been and dropped ervything so we could drive straight over. They sat and prayed with us, and committed to being on this journey with us.
My faith had been rocked after losing Baby J via miscarriage, and now it was being tested again. I had been angry after our loss but now I knew I had no time for that, my baby needed me to intercede for him and to fight for him.
There was no reason why our babies heart had formed like this, below are some facts about CHD from https://www.tinytickers.org/media-centre/chd-statistics-and-research/
- One in 125 babies is born with Congenital Heart Disease (CHD)
- More than 6,000 babies are born with major CHD each year in the UK
- In around 33% of cases, the CHD is detected prenatally
- Around 1,000 newborns leave UK hospitals each year with undetected CHD
- CHD is the most common congenital anomaly
- Up to 15% of CHD may remain undiagnosed at death
- More than 300 infants die every year in the UK from CHD
- CHD accounts for up to 12 % of all infant deaths – 1 in 10
- When detected, we know that many heart conditions can be treated – surgery survival rates are very high and 80% of babies born with a congenital heart defect survive past 16 years of age. The NHS has some of the world’s leading heart surgeons and doctors, and units around the UK are achieving remarkable things every day.
Some of these statistics are very hard to read and after spending time googling some of the things we had been told, I decided I was to scared to look. It was sending me crazy, all the what ifs. If you are going through this. I would not recommend spending a great deal of time googling things.
The day before our scan, none of this had meant anything to us. We had no understand of CHD, nothing like this had happened to me or Marvin before. But now, it consumed our lives.
Our faith was the thing that got us through. We reached out to specific friends/prayer warriors, and asked if they would join us on this journey and commit to praying. There are around 30 people on our prayer chain, who have suported us through the most difficult time of our lives, (plus being shared on other prayer chains). Praying for us at times when we couldn’t even pray for ourselves. Knowing they are praying for us means a lot, it encourages us and we believe prayer works!
Throughout the rest of our pregnancy we had extra scans planned to check on babies growth, it seemed like almost every 2 weeks we had a scan either at our local hospital or at the fetal medicine unit in Manchester. Fortunately at every growth scan, there were never any concerns about growth or any other issues. We did have a private 4D scan which had been a gift from my sister for my 40th. It was really nice to have a scan for pleasure and not for medical purposes, just to see our little baby as a little baby.
The next cardiology scan with Dr Gladman was encouraging. The whole atmosphere in the room felt different, Dr Gladman was chatty, something we had been praying about it becasue the usual silence they needed to concentrate was excruciating. We were taken into that small room with the comfy chairs and paintings on the wall again, the diagnosis was still the same but the right artery had grown. Dr Gladman said he had feared it was going to wither away completely but it had grown, praise God! And the fact that the hole was still large made it easier to operate on.
The doctors wanted to induce me 10 days before our due date in order to plan for a bed for Azariah on the NICU (newborn intensive care unit). I had such mixed feelings as this date approached. I had been really sick with this pregnancy, more so than any pregnancy before so in a way I was excited to get my body back and no longer suffer with sickness. But I knew while our baby was in my womb, his heart didn’t struggle to work, the problems would occur once he was born.
Giving birth is such an unknown quantity, so many things can happen and it can be different each time. So naturally I felt worried but now I was being induced my worries increased. So much felt out of control, was I going to have to have a c-section, how much time would we get with baby before he had to go to the NICU, what did our baby need, how would he feed. My mind was reeling with so many questions. My heart broke at times for the things I was going to miss out on. I could be doing a smple task like the washing and I would think about washing babies clothes and the next moment I would find myself on the floor in tears becasue I didn’t even know if my baby needed clothes.
We felt unable to buy things, we felt stuck. We had been told to expect him to stay in hospital for around 8 weeks so what was the point in buying a pram or a cot, when he wouldn’t need it for a while. I had been told I probably wouldn’t be able to breastfeed because babies with heart defects struggle to suck and would need tube feeding. Another thing I felt had been taken away from me. My mind reeled with this stuff everyday, so when people asked me if I was excited or said I bet you cant wait to meet him, inside I would think you really have no idea how terrified I am but outside I would smile and say of course.
I have two children already and had been so excited to do this again, so much older and wiser. But preparing to have a baby who will need surgery and a hospital stay is not the same as preparing to give birth with no issues known.
I have a friend who wrote a book about her experiences with her son and his heart called “Blue Baby” by Tracey Helen Beatty. After reading her story, I knew this was not a time to be weak in my faith, and infact it increased my faith. We know that God is good, we have both experienced His goodness time and time again in our lives. He had not failed us yet and we knew he wouldn’t fail us now. One of the things I came to terms with was that healing may not look like we want it. Marvin was so adamant that God was going heal our son’s heart before he was born so he wouldn’t need surgery. But I asked the question, what if he didn’t? Would we be ok with that? And the answer was yes. Yes, we would be ok with whatever happened as long as God was in control. Tracey’s book had helped me put that in perspective, and I am grateful for that because I didn’t want to set us up for disappointment.
The link for that book is here https://www.whsmith.co.uk/products/blue-baby/tracy-helen-beatty/paperback/9781788484022.html
I hope our story can encourage others going through the same or similar. Our journey is far from over and there is so much more to tell. My next blog will be about Azariah’s day of birth.
Let’s continue to press on to be all God created us to be x