I wasn’t sure whether to write this blog, but I know that it will help me to process. I don’t feel strong enough for this. But, a few people have reminded me over the last few weeks just how strong I am. Even though I feel weak at the moment.
Every life is a miracle. Every baby that is born has won against the odds and is cause for celebration.
When I found out that I was pregnant, after the initial shock, I was happy that my body has recovered so beautifully after some nasty cancer treatments. As someone from my church said to me, this baby really is a miracle. I had been told by doctors that I wouldn’t conceive naturally. I was even offered fertility treatment, which I declined.
I did, however, say to my husband Mike fairly early on, that some people would judge us for daring to have another child after cancer. Some would think that having more than two is madness anyway; and if the baby was ill, they would be quick to blame the cancer or its treatments.
My pregnancy has been surprisingly easy: little sickness, little fatigue. I feel physically stronger than I have done for years. The 12 week scan showed no problems at all, and I was referred to an obstetrician due to my medical history. She asked about my cancer treatments, including which chemotherapies I was on (they are very diverse, and you get different chemos for the huge range of cancers); as well as other medications. She said that there are absolutely no concerns due to cancer. My having had treatments (a few years ago now) would not even slightly increase the risk of any illness or disability to my baby. One thing that she did mention was that I didn’t need to be referred for my medical history, but I should have been due to my daughter’s.
When my daughter was born (a long time before I had cancer), there was a valve that should have closed straight away at birth (the human body is very complex) but hadn’t. She went grey when she cried due to lack of oxygen getting around her body. She was resuscitated twice soon after birth, and then taken to Special Care Baby Unit. A cardiac consultant who happened to be visiting from Bristol at the time, did a thorough heart scan in SCBU while we watched. He said that she would need a heart operation in Bristol, in the next few days. Obviously this was a complete shock to us, as nothing had been picked up on any scans, and there is no family history of heart problems.
We told family and close friends, and spent the next few hours watching her connected to numerous cables and monitors, and praying for healing. Amazingly, by the next day her heart was perfect. There was no need for any operation or even follow-up, and we were never even told her actual diagnosis at the time. She is completely healthy and almost never ill.
When we saw the obstetrician, she said that sometimes there is a small risk of younger siblings having heart problems if an older one had. This was the first we’d heard of it. Any baby that is born, no matter how healthy, young and awesome its parents are, has a 1% chance of having a heart defect. Often these are minor. A baby who has had a sibling with any heart problem, generally has a 2-5% chance of having a heart defect: usually these are minor. These are fairly tiny percentages we are talking about. I doubt that many people deciding to have a baby find out what percentage chance there is of their baby having this, that or the other defect, illness, or disability. If they did, they would probably not take the risk, and get a puppy instead.
My obstetrician wasn’t concerned, but said I could have a 24 week scan, on top of the normal 20 week one, just in case. I went away feeling reassured.
So, besides a niggling feeling that something wasn’t right, I went fairly confidently to my 20 week scan. The sonographer was very thorough. Baby wasn’t in a good position, so I had to go and empty my bladder. She spent a while looking at the heart, and then asked about my daughter. I can’t remember her exact words, but they were something like:
“There is something wrong with your baby’s heart.”
That was the moment that everything changed. Any hopes of a healthy, happy pregnancy and baby were gone.
The sonographer would not talk about it anymore, understandably as she isn’t a cardiac doctor. She took another scan and some photos of the baby, and went off for a few minutes to complete a referral form for our nearest cardiac specialist hospital, in Bristol.
My husband and I were upset, but there was still a chance that the sonographer had got it wrong, or it was only a minor defect. But, having looked more carefully at the baby’s heart on the second scan that she did, I could see very clearly that the heart wasn’t right. A large part of it seemed to be missing, and although I am not medically trained, I knew that something was very wrong.
We were told that Bristol would contact us for a scan soon, and left the hospital, to go and tell our children and family some very bad news. We had an awful two week wait until we saw the foetal heart sonographer, consultant and obstetrician in Bristol. While others celebrated a ‘happy new year’, we knew that 2019 would be an incredibly difficult and horrible year, just when things had finally started to look up.
The foetal cardiac consultant confirmed soon after the very detailed scan that baby has the very worst type of heart defect. The heart can never be fixed, and baby will never be well. There was also concern about other organs’ functions. They told us that an option was to terminate. We didn’t have to decide then, but were sent away and told to get back to them. Mike and I had been worried before the scan that if the news was very bad, we may have different opinions on how to proceed.
Thankfully, we both quickly agreed that the best decision for our baby was to carry on with what would essentially be a ‘normal’ pregnancy (I am breathing for him at the moment), and allow the baby to be born. The doctors can’t tell us how long baby will live after birth, but it may be hours or days. This is called comfort care, where the specialist nurses and doctors ensure that the baby doesn’t suffer any pain, but that it will be allowed to die naturally, hopefully in our arms.
We decided to find out the baby’s sex, to help us think of it more as a little person. It is a boy. We wanted to name him before birth, to give us a chance to get used to his name. We asked our children if they had any suggestions, and our daughter said “Samuel.” This name was already on my short-list of boy’s names, so his name is Samuel. It means ‘heard by God’. In the Bible, Samuel’s parents dedicated him to God as a young child. When I read the Bible as a child, I was always in awe of his parents, who must have trusted God so much to let their son go. He audibly heard God talking to him, from a young age.
The NHS doctors, nurses and palliative care team are doing a wonderful job of looking after us and making sure that everything will be in place for the best possible birth experience for me, and the best care for our family once he is born. They will make sure that we have as calm and special a time together as a family of five, no matter how short Samuel’s life is. They will take photos and fingerprints and put together a memory box for us. They are trying to get us space at a hospice, for if he lives long enough for us to go there. I have a wonderful cardiac nurse who is keeping me updated on all of the meetings that the many teams are having about us, and the numerous appointments that I am having. She is an ex-South African too, and an absolute Godsend.
The palliative care team have told us that we are a very rare case, in that our baby isn’t born yet but that we know, barring a miracle, he will die. We have discovered that most people in our situation choose to terminate. They are making lots of plans for us, in case I or Samuel are ill after birth, that we are still cared for well. We will be meeting the NICU (Neonatal Intensive Care Unit) team, and see the private suite where I will hopefully be able to give birth. We can also visit the hospice.
I have come to realise that, even though he may only live for a few hours, my youngest son’s life is just as valuable and precious as anyone else’s. People don’t like to talk about death, yet we all know that we are going to die one day. I am not worried for Samuel when he dies: he will be in Heaven, safe and free from pain.
Please don’t avoid or ignore us for the next few months in case you say the wrong thing. If you are a good friend or close family and genuinely care about us, your ‘wrong’ words will be much less painful than losing a relationship with you.
That being said, please don’t tell us that we should ‘have more faith’ or quote lots of Bible passages at us as though we haven’t read the Bible before; or that you know exactly how we feel because your cat died last week. Also, please do not tell us if you decide that you know why Samuel is ill. You don’t know why and would only be showing your ignorance. People often want something or someone to blame, but your opinions on the matter will not be helpful, now or in the future.
If you want to help, please feel free to pray for us. Also, send an occasional message to let us know that you are thinking of us, so that we don’t feel too isolated. If you have lost a child, please know that you are welcome to talk to me about them. Your story is valuable.