Journeying Through A Baby's Terminal Diagnosis

Walking through the painful and challenging journey of dealing with a fatal diagnosis of our unborn baby, has led me to realise how common baby loss is. There are so many ups and downs as we travel this road, and so many emotions and feelings to navigate: deep sadness, guilt, fear, anger and even jealousy.

I wanted to share my experiences and the things that are helping me through this rollercoaster of a journey, as I know there are many others out there who have also walked this difficult path, or who are journeying through it right now. Going through the grief of receiving our child's fatal diagnosis of Anencephaly, has only stirred within me the desire to be able to help others who are also suffering in this way. Sharing my story is in no way a ploy to receive a 'pity party', although the love and sympathy we have been receiving along the way from many has been very much appreciated and a good thing, but rather in being authentic and open about my feelings and the practical ways I have been finding comfort and strength I am hoping will be of help to other grieving mothers and fathers.

I'm not going to shy away from the truth and the reality of this situation, but I will be honest about what feelings I have experiences, both the good, the bad and the ugly, and I hope and pray that this will offer reassurance, comfort and help to others. Even if you haven't been through baby loss, reading this might also be helpful so you can understand what others face and experience when they are going through this, and inspire you to know how to help parents travelling this painful road.

Receiving The Diagnosis

Nothing can prepare you for the shock and overwhelming pain and sadness that hits you when you hear those words you hope to never hear. Tom and I found out there was something wrong with our darling baby at our twelve-week dating scan, and I can remember immediately bursting into tears when we were told, 'There's something wrong with baby's head.' It almost feels as though you no longer belong to your own body, and that you're walking through a nightmare that you just hope and pray you will wake up from, but knowing this is actually reality and there's nothing you can do.

When you are so desperate to have children, and previously went through such elation, joy and excitement of seeing the positive pregnancy test, to only then be told your baby is going to die, the feeling of falling from Cloud 9 to earth with the biggest bump imaginable can leave you wondering if you will ever recover or cope. This is a very normal feeling, and I can honestly say that I have felt this a few times, not just at the beginning of this journey; however, I can also confidently say that when you turn to God, He can carry you through places you thought you could never cross, which I will go into more detail with as I go on.

Decisions

When you are given a fatal diagnosis for your baby, you are given a decision to make from the medical professionals. Do you want to continue with the pregnancy or terminate?

I can't speak for others or tell you what to do, but I can share with you our decision and explain why we came to that.

For us, there was no question. We knew that even though we would not have a child to raise at the end of the pregnancy, we were seeing it through, for the following reasons:

1. We believe that only God has the authority and right to give and take away life. What happened to our baby was in God's Hands and in His control, and we decided that we would trust Him with the outcome, even if it meant losing our little one.

2. In line with point one above, because we believe that God is Sovereign and it's His decision what outcomes we face in this pregnancy, we also wanted to give Him the room to work a miracle if that's what He wanted to do. We knew that God might not decide to work a miracle of healing in our situation, but I have seen enough miracles in my time to know that God can and will do it if it's within His will, and we didn't want to close that door to a miracle if He chose to open it.

3. Also, my maternal instincts and Tom's paternal instincts had already kicked in to protect, nurture and love our baby, even though he was still in my womb. We were going to love and protect him, for as long or as little time we got with him. A fatal diagnosis does not make him any less a valued life, or any less human. He still has a beating heart, he still has a growing body and human features, no matter how small he was at this stage. He still has a right to life, no matter how short that might be.

Deciding to continue with the pregnancy still comes with questions and fears. How could I still find joy throughout this time knowing my baby was only going to pass away? I prayed about this, as it was a genuine concern for me, and I can honestly say that in His goodness, God has truly given me beautiful moments with my darling baby throughout my pregnancy. Feeling him move and kick, hearing his heartbeat on the monitor and seeing him in the scan pictures are all moments that are beautiful, precious and joyful, and I can say that in all honesty. I have no regrets.

A Rollercoaster Of Emotions

I said at the beginning of this blog post that as you navigate grief, you will face a variety of different emotions, which are all a very natural part of the grieving process. When your baby is given a fatal diagnosis, the grieving doesn't start after the loss, it begins right from when you receive the news, and there are different stages and levels of grief. The following emotions are what I have been experiencing and how I have been dealing with them.

1. Guilt One of the first emotions I felt was guilt. Had I done something wrong that had caused my baby's condition? Was there anything I could have done differently? What if I had done something that had brought this on? The important thing is to voice these fears and talk through them with a medical professional, as keeping them to yourself will only eat you up inside. From the first appointment I shared my fears with the midwife, who immediately reassured me it was not my fault, or Tom's fault, and it was nothing we had done. It was just one of those incredibly unfortunate things, that was out of our control. I also asked the same questions of two or three different Consultants at two different hospitals, who also reassured me of the same answers as the midwife. Blaming yourself will get you no where, and only lead you down a dark path you don't need to go.
   

2. Anger I have felt angry at different times throughout this journey. On and off, I have felt angry with God. Why had He allowed this to happen to us when we dearly wanted a child? Why would He allow us to have a baby with a fatal condition when we would only offer so much love to this child and raise them surrounded by comfort and would do anything for him? Why is it that there are people out there who don't deserve to have children because they only neglect and abuse them and yet they get to have healthy children? I remember one night sitting on the sofa thinking, "Do you even care how I'm feeling God? Do you even love me? Am I just a pawn in your big game of chess? Do you even understand what I'm going through?" Even as these questions and negative feelings flooded my mind, I felt God say to me instantly, "But I do understand. My Son also died on the cross. Look at what Jesus went through." Instantly I realised that God knew exactly what I was going through and very much cared. It helped dissolve the anger that was clouding my thinking. Don't get me wrong, I have had to keep reminding myself of these truths, and my husband has had to remind me at different times as well, but telling God how I feel, even admitting I feel angry with Him and why, has been healing for me and kept me from remaining in a place of anger. At the end of the day, God knows exactly what is in my heart and what I'm thinking anyway, so I may as well be honest with Him and tell Him. There's something that unlocks in your heart when you are open and authentic with God - when you tell Him honestly how you feel, He works in your heart and peace comes flooding in. I don't know why God allows certain things to happen. What I do know, is that we live in a world tainted with sin, and that bad and terrible things happen as a result of that. I also know that God works all things for our ultimate good, even when it doesn't feel like it, and that He will always be glorified in every situation. God has a wonderful way of bringing beauty from the ashes, and I know with all of my heart that although this situation is heartbreaking, He will use it for our good - and that good might be drawing us into a closer relationship with Him and shaping us into better people who trust Him more, and into people who can help others who are also going through the tragedy of baby loss. "And we know that in all things God works for the good of those who love Him, who have been called according to His purpose." (Romans 8:28.). There are some beautiful lyrics to a worship song called 'Waymaker' that I love, which says: Even when I don't see it, You're working Even when I don't feel it, You're working You never stop, You never stop working You never stop, You never stop working. If you do have questions, like I have had, as to why sometimes God chooses not to work a miracle even when you beg Him for one, may I recommend you watch this beautiful clip from the series The Chosen? It's more beautifully and eloquently explained than I could do, and when I watch it, it's almost like Jesus is talking directly to me.
   

3. Jealousy There are moments of jealousy that take hold throughout this time: when I see mothers out and about with their babies, when I scroll through social media and see Mums sharing photos of their newborn babies and their daily lives with their kids and when I see posts on Facebook or Instagram of pregnancy announcements and baby scans. When you see mothers experiencing the joy of motherhood and cradling their babies, it's hard not to feel envious, as I have felt that others get what they want and I don't, and it's a painful reminder that I'm not going to have what they have at the end of this pregnancy. Again, this is something I have had to take to the Lord in prayer, as envy and jealousy will only make this journey harder and turn me into a bitter and resentful woman. I have found that when I ask God for the strength to do the right thing, He always does, even though it is a battle at times, but it's a battle worth fighting. The battle involves taking my thoughts captive and not dwelling on envy and bitterness, and it takes action, which means at times I have made myself comment with 'Congratulations' messages for those who announce the birth of their new baby. During this time, I can truly tell you that when I have done this and purposely taken active steps to do this, I have been able to genuinely share in the joy with these families. However, what I will say, is that if you find it helpful to take a 'break' from social media so you are not bombarded with posts like this which you only find heighten your pain, then take that social media break. You need to do what is going to be most healing for you.
   

4. Overwhelm There are times when I have felt overwhelmed with grief and sadness, and that's natural. Taking time out to process what is happening and to navigate your feelings is totally normal and for me definitely the right thing to do. I have needed time off from my job to work through my feelings and rest. Grief is very tiring and wearying, so please be kind to yourself and admit when you need time to process and heal. It's not just after the loss that you will need time to do this, but also when you face a devastating diagnosis for your baby and travel this path. Admitting you need help and taking time off work does not mean you are weak - just the opposite! It takes courage to admit when you need help and when you need time out. Walking this path has taught me an awful lot about humility, as naturally I am a very prideful person and don't like to admit I need help. But pride truly does go before a fall! We're all human, and we all need a helping hand sometimes, and we actually heal better when we face that and do something about it. The help I have needed has involved taking some time off work when I've needed it, allowing my husband and father-in-law to do my housework for me (this has been more for my physical wellbeing due to my complicated pregnancy, but also due to the fact I have been very drained for emotional and pregnancy-related reasons) and joining an online support group.
   

5. Fear For me, there have been different fears to navigate. With this being my first pregnancy, there are all the natural anxieties all first-time mothers experience about carrying a baby and labour, but with our baby's diagnosis, there is all the unknown as well of when our baby will make an appearance (there's a high chance he could be premature), will he even be born alive, and what condition he will be in. There's also the fear of will this happen again and will we be able to have healthy children in the future? Again, talking through my fears with the Consultants and Midwives, and joining a support group that is designed for families facing the diagnosis of Anencephaly like our baby where I can ask my questions and hear the stories of others, has been so helpful for me. Fear is a very natural part of grieving, and learning to take one day at a time instead of worrying about the future is key to controlling your fears. This is something I am still learning, as I have days when I am peaceful and other days when I feel riddled with uncertainty and fear. "But seek first His [God's] kingdom and His righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." (Matthew 6:33-34.)

Finding Help

To conclude this blog post, I want to finish with some pointers I have used and am continuing to use to help assist me through this time.

1. Music They say that music is a form of therapy, and the best form of therapy has been worship music for me. Listening to and singing songs of worship to God has helped me to keep my eyes on Jesus rather than on the storm. Do I always feel like it? Absolutely not! There are times when I have to battle and actually force myself to listen to worship music and join in, whether that's in my heart or out loud, but I can honestly say that in the moments when I have chosen to do that, I have found peace quicker than when I have chosen not to worship. In the Bible, we read that Jesus walked on the water to his disciples when they were in a boat. Peter said to Jesus that if it was really Him to bid him walk to Him on the water as well. Jesus told Peter to come, and so he lowered himself out of the boat and in faith started to walk towards Jesus, on the water! But as soon as he took his eyes off Jesus and focused on the storm about him, he began to sink. (You can read about this account in Matthew 14:22-33.) I have felt exactly the same. When I have focused my eyes on Jesus, I have walked above the storm, but as soon as I focus on the storm rather than on Him, I begin to sink.
   

2. Surround Yourself With A Support Network It's vital you have a good support network to surround yourself with. There are times you need to be alone and have some 'me time' for sure, just don't stay locked away forever! Human beings are designed for relationships, and especially when we're going through tough times, we need people in our lives that we can rely on. I am so blessed to have a wonderful family who are always there for me - they let me have my space but are there at a moment's notice when I need some company or need to talk and have a cry to. There are countless people around the world praying for us as a family, and being part of the family of God is the hugest blessing of all. Knowing there are so many praying for us and who care is so comforting and we feel so supported because of it. At Church, there is always someone with a listening ear who will pray with us, cry with us or who has offered practical help. We have already had offers to be put on the 'meal chain' where people will cook meals for us, which we will definitely need when we actually lose our baby.
   

3. Communication & Memory-Making Going through baby loss is a huge thing, and sadly some marriages don't always survive this kind of tragedy. But as a couple, you will need each other more than ever. Communication is key. You might both be going through some of the same emotions, but you will also be going through different ones and will also have different thoughts and feelings which you will need to talk through and discuss together. It's vital you make time for each other and be open and honest about your feelings, and you will also both need to be understanding and compassionate to support one another through your grieving process. Don't keep your feelings to yourself! And if your other half isn't as good as you at sharing how they feel, be patient with them, and encourage them to share but allow them to take their time. Thankfully I'm married to a man who is a good communicator in many ways, and we always make the time to share with each other. Make sure you also find ways to still make memories together, especially if you are also going through a pregnancy that doesn't have a favourable outcome. That way you feel as though you are still including your baby in your life and doing things together as a family now. That's what Tom and I have been doing, and it's been really beautiful and helpful for us.
   

4. Join A Support Group I have joined a Facebook support group through a charity called Shine, which specifically is catered for families who have faced or who are facing pregnancies with babies who have been diagnosed with Anencephaly. It's been so helpful and invaluable connecting with other Mums who have walked this path before me, and they have been able to offer encouragement, advice and support. There are so many support groups and charities out there that cater for families who are experiencing or who have experienced baby loss.
   

5. Helpful Resources Tom and I were given a book by one of the midwives at hospital which had been donated by a mother who had lost her baby daughter. It's called 'The Baby Loss Guide' by Zoe Clark-Coates, who is a grief expert and also founder of The Mariposa Trust. I have already started reading it, and what I have been reading so far has helped me to realise that I am not alone in this journey and I am finding it incredibly comforting. This book offers practical and compassionate advice, and I love that it includes a section at the end of the book for '60 days of support and journalling' which I plan on doing after our baby's passing.

I realise that this blog post is longer than usual, and yet I have barely scraped the surface of how to navigate through grieving a baby's terminal diagnosis, however I hope that through sharing my story and experiences so far will be of some help to you. I still have my good days and my bad days. There is no magic formula to overcoming grief, but make sure you are kind to yourself, and remember, you are not on your own. If you have any questions, please feel free to leave a comment and reach out.