The worst day of our lives.

I’ve had bad days in my life. Depression will do that to you. I can catastrophize with the best of them.

This was not one of those days.

One of the things that I knew about my wife from before the time we got married was that she wanted four children. I, on the other hand, wanted two. I’m the eldest of three, and I know how that plays out. We had ‘J’ 15 months after we got married, ‘E’ came along a bit over three years after that. Eventually, I changed my mind, and our daughter ‘B’ was born just before Christmas in 2003.

As far as I was concerned, three was it. We moved to Melbourne in 2005, I bought a Commodore sedan (“Big Red” as the kids call it) which seats a total of five people, and we settled into our new life here. Tan still wanted four kids, but I stonewalled. Between dealing with the depression, and our aspie kid(s)… No way. No how. No room in the car for another one.

A few months ago, I changed my mind. Several reasons behind it, but the summary is that I did change my mind, and we decided that for us, four would be a magic number. My depression is largely under control. We’ve worked out (mostly) how to manage the ASD stuff. The kids were all very excited, and Tan was over the moon. We started preparing emotionally, and Tan started taking folic acid tablets. Doctors recommend taking folic acid to reduce the instances of neural tube defects. After Tan fell pregnant, we saw our doctor, and she discussed having an amniocentesis test for birth defects. Tan and I had already had the discussion, several times over the past fifteen years, and we still feel the same way. If our child was born with any of the defects they can detect with an amnio, such as Downs Syndrome, we’d find a way to make it work.

We decided that we wouldn’t tell anyone we were trying until we knew we were pregnant, and not until we’d reached the end of the first trimester; statistically, if you make it to twelve weeks without a miscarriage, then the likelihood of a miscarriage is fairly low. We knew what it was like to tell people about your pregnancy and then have to explain that you’d lost the baby; between J & E, we had a miscarriage at 9 weeks.

I’m not good at keeping secrets. As it turns out, neither is Tan. I let it slip to a couple of people; and a few of Tan’s friends worked it out without her having to say anything. According to the doctor, Friday the 5th of November was the 12 week mark, and we were having the ultrasound on Tuesday afternoon.

We’ve been pretty excited, and I couldn’t help myself. Tan agreed, so on Thursday night we called her parents, then we called mine, then the rest of our family. On Saturday we made the news public on Facebook and Twitter.

I left work early yesterday, and made it to the Women’s health centre with two minutes to spare. Tan had to bring B with her, and soon the three of us sat in the quiet dusk of the ultrasound room. We were all excited at the idea of the first glimpse of our new arrival. Pleasantries were exchanged and the ultrasound commenced.

After a few minutes the technician let us know that we were at twelve weeks and six days gestation. The next thing she said made my blood run cold.

“I need to tell you something, but I don’t want to tell you with your daughter in the room.” We asked B to go and play in the play area, which she happily did, and the door closed quietly behind her.

“There’s no easy way to say this, so I’ll be direct. Your baby has an extremely rare birth defect called ‘acrania’.” She then went on to explain to us what this means. By ten to eleven weeks a baby’s facial bones and skull have developed to the point that they appear as white areas on an ultrasound.

Acrania is a neural tube defect which causes the baby’s skull not to develop; in our case the skull and meninges are non-existent. On the ultrasound the technician showed us where the baby’s brain matter is directly exposed to the amniotic fluid, and that the brains are free floating with nothing to enclose them. I apologise for the graphic description, but the way it was described to us is that between the exposure to the amniotic fluid, and with nothing to protect the brain from the wall of the uterus, the baby’s brain is effectively “worn down”. There’s already areas of the baby’s brain visibly showing damage.

According to the literature, acrania is 100% fatal. You cannot survive without your skull. If Tan successfully carries the baby to term (and we’ve been told that there’s no immediate reason to think she will miscarry), our baby will die, likely within a few hours.

Having seen the development of my three children through their ultrasounds, and as they’ve grown, I’ve struggled with the idea of abortion, particularly as birth control. For well over a decade now I’ve described myself as “pragmatically pro-life”; I had a conversation many years ago with a Christian friend who found herself in an impossible “either the baby will die, or you both will die” position – it led me to the conclusion that as with many things in life, not everything is simply black and white. As much as I personally wish it wasn’t, I’ve felt that sometimes there are cases where abortion is sadly the best of a terrible set of options. I’ve made no secret of this over the years. I’ve been smacked around by pro-life and pro-choice proponents; I very rarely discuss it with people the days, because it’s not a conversation that ends well. I long ago stopped judging people who made this choice. They carry enough of a burden already without me adding to it.

Now we find ourselves facing that impossible set of choices.

This is our precious dearly-wanted daughter. We’ve spent the past twenty four hours in agony over what to do. While I say I’m “pragmatically pro-life”, and I would completely understand someone choosing termination in a situation like this, it’s not someone else facing this decision, it’s us. I’ve seen her moving around, her tiny little legs and arms. I don’t know that I can choose to end her life in that way. The alternative is for Tan to carry her to term. In six months or less, she will enter the world, and we will have to watch her die. We’ll still be choosing to end her life, because there’s no point to resuscitation. It doesn’t matter what we choose, we’re choosing death. From what I understand, we can’t even choose to give another baby life through organ donation; the process of our daughter’s death will cause damage to her organs making them unsuitable for transplant.

I know some of my friends believe that God can do amazing miracles. And truth be told I’ve had at least two experiences in my life that are inexplicable to me, and to those who experienced them. But right now, my faith is not strong enough to believe for a miracle. Some of my other friends believe there is no God. I respect why they’ve come to that conclusion, even if I don’t agree; right now, I can understand why. I don’t think I’ve beaten anyone over the head about faith for a long time now, and I’m not about to start again now.

For the record, I’m not interested in having a debate in the comments over the existence of God, or why I’m a Christian, or being pro-life or pro-choice. If you really feel the need to tell me that stuff, then come and see me and tell me in person, face to face. It’s all too easy to judge someone’s situation from afar – it’s a lot harder when you have to look them in the eye. If you really feel the need to “declare a miracle” then don’t do it in the comments. God will hear you wherever you say it. I can’t deal with reading that right now.

I need you to understand this. If we choose to terminate our daughter’s life now, we will have to live with that awful decision each and every day of the rest of our lives. We will have to live with the judgement of people in our community who can’t see past the end of their ideology. If we choose to go to term, it means that for up to six months that should be full of joy, the first flutter, the first kick, everything leading up to that joyful moment of birth are instead months of grief leading up to the birth, and the subsequent death of our daughter.

It doesn’t matter what we choose; there’s no happy ending, and our hearts are heavy and breaking.

  • oh Warwick. My heart is breaking for you guys. I have no words. I pray that God’s grace will guide and comfort you at this very very difficult time. You are brave to share.

  • Stef Taylor

    Guys, I am SO sorry. There’s nothing that can be said, but please know that we will be storming heaven on your behalf for your whole family. We love you guys heaps, from Stef, Sam and the Pankhurst clan xx

  • We are here Lots of love.

  • kylie and quinton stead

    tan and war,
    we are both sorry to hear this news, we understand how hard this decision is and we know that you will do the right thing for your family.
    in all honesty it is no one elses business what your choice is, as you both know what you can live with.
    we cant tell you what we’d do as it’s a bridge that everyone must make your own decision about.
    good luck and god bless, and we’re here if you need some one to talk to.
    kylie and quinton.

  • Liz Fairbairn

    My heart goes out to you both – and to your children.
    Choose what you think is right for you and your daughter. It is not anyone else’s choice.

    you will be in my prayers.

  • Christine Tuddenham

    Oh guys, both of you. As our family has gone through a similar experience, I feel even more strongly for you. I don’t believe in god, but I can put my beliefs away for now and pray for you. As ‘Michelle George’ said, you are VERY brave to share. My family and I are thinking of you as you go through this.

  • steve vella

    Waz, I have tears in my eyes as i write this. I’ve typed about three sentences to start this message and none of them seem to be able convey what I feel. You have my constant respect and love whatever road you travel on, and may God’s grace be with you as you go.

    peace to you and yours.

  • Bruce Ray

    After speaking with you recently I could see a new man – just do what you have to do. We are hear for you if you need to talk. we will pray for you.
    Bruce & Sandra

  • Phil and Nadine

    We are thinking of your during this time. We will keep you in our prayers with decisions you have to make over the coming weeks – May God comfort you during this time

  • Freya & Duncan

    Our love to you & all your family. We can’t even imagine what you are going though but know we are thinking of you.

    This a decision that no matter what you chose will always be with you. Do what you feel is best & know that your daughter will always be a part of your family no matter the choice you make.

    Be kind to yourselves & each other.

    Love from Freya & Duncan

  • Pip

    How horrible for you all. I am so sorry you are going through this. Only you know the right choice for your family. And your choice WILL be the right one. I would suspect this is the most difficult time you will have to endure… and I know that the most important thing is to hang tight to those you love the most and take your time to pass through these difficult days. One tiny step at a time is the way to go. Thinking of you all.

  • louattheend

    I feel so sad for you. What a horrible, horrible decision.
    I dont know you at all….Have never met you, probably never will…I’ve only read a few of your blogs….never commented….followed you on Twitter.
    Thankyou for letting a stranger have a small glimpse into this awful period of your life…

  • Joanne van der Plaat

    Waz, thinking of you guys and praying for guidance and peace with whatever decision you make.

  • Nick

    Warwick, I’m without words. Whatever decision you come to I can’t see your God or anyone who genuinely cares hold it against you.

    You’re in my thoughts.

  • Neal Henderson

    Thanks for sharing with everyone guys, Im not good with words, but I just want you both to know that whatever decision you make you will always have my love & respect Neal……………..

  • “The Lord is close to the brokenhearted; he rescues those whose spirits are crushed.” – Psalm 34:18

  • Karolynn

    Your decision is beyond imaginable for me; however, as I read your story with tears and compassion, what came to my heart was this…your divine baby daughter shall thrive on in perfection regardless of the choice you make regarding her physical body. There is no right or wrong choice. Time is an illusion. Whether “life” in the flesh is short (only a few months in the womb) or long (in the outside world), in our perception, the ultimate outcome is already done. Her spirit…who she REALLY is…is ALREADY, and always will be, ONE with yours and with the Divine Father and all that is. Whenever we “choose” this life in the flesh, we do so knowing on some level that we are so much more than our body, which is only a temporary cloak the spirit wears for an experiential “moment” in eternity. Only the spirit is infinite, and hers has already been blessed perfectly through the experience of your receiving her with love and acceptance into this world of physical experience, through your lovely wife’s womb. She doesn’t need a skull and brain for her spirit to feel that love you’ve already given her, and appreciate the risk you were both willing to take (the unknown of the adventure of parenthood that we always take when we bring a child into this world) in doing so. I lift you all in sweet compassionate prayer for miraculous peace, clarity and healing as you contemplate and choose your path on this journey, with God as your traveling companion. The destination is always the same for all of us…”Home With God In a Life That NEVER Ends.” (Title of a book by Neale Donald Walsch, that made a huge difference for me when I lost a loved one recently). May you feel the blessings, infinity and love of your beautiful daughter’s spirit now and always. Thank you for sharing your story.

  • I gave my kids an extra special cuddle before they went to school this morning

    I can’t believe how brave you are to share this. Both of you, please remember, as you go through this, that the other is hurting as well. Be there for each other, as you two are the only ones who really know what its like for each of you.

  • I had ‘something in my eye’ when you told me your devastating news yesterday and it’s no different today reading your post.

    There are no words. I think we all know that. Just know that we all care.

  • Julie Mullins

    Hi,
    I don’t know you my friend posted this on Facebook…words can not describe the heartache you and your family are going through. I believe God is compassionate and is love my prayer is that you will come to a decision that brings you complete peace and strength to get through all that is before you.
    No matter what you choose this child is loved and will change your life for ever, you will never forget her she is part of you. Much love and many prayers xx

  • my prayers are with you guys at this very sad time, Whatever choice you make it wont be easy and I cannot even begin to imagine how hard it must be…

  • Heide

    I’m so sorry to hear your news… I will pray for you and your family… The only thing I can think of to say is, God can use ALL situations for good even if we can’t see it. He is in control and He knows your hearts… xx

  • Andrew

    May God carry you all through this time.

    Eventually, you will see your daughter again. Look forward to that time with Joy!

    We weep with you, and pray for you.

    I suggest that you don’t need to rush the decision, but let it come to you both, gently, in the stillness.

    What other people think doesn’t matter, as a person with a disability, and 8 other family members also with disability, I learnt that a long time ago.

    Lean on God, and let him carry you.

  • Dan P

    Waz — mate — I can’t even begin to imagine how you and your wife must be feeling.

    This is a situation that no-one should have to deal with, but something that you can — and will — come through.

    I don’t know what to say but I’m reminded of that poem, and that this must be a time when there’s only one set of footprints in the sand — and when God will carry you.

    We’ll be praying for you, mate.
    Dan

  • louise and tim apelt

    love you both, jesus is your strength and may he be your comfort in all you do xx

  • SMITH

    Hello Tan and War

    I really understand what you would have gone through because I had the same problem with my 1st pregnancy and it was 1st baby for me and my hubby..I really understand what you would be going through..Infact i dint know about this until 6th month and then had to deliver the baby which was horrible.I really understand what you both are going through but then I think God has some good plans for all of us..Thats what makes us feel better infact I still have not recovered its been 5years and have not even tought of babies after that hope you and Tan have a newbie very soon.. I will surely pray for you both..All the best

  • Thank you for sending me this link Tan. I have read what Warwick has written and my heart is heavy with pain for you both, all family. Warwick said it beautifully in his last line. I believe that God understands better than any of us what the situation was and I know that He would be your comfortor, not judgemental but Loving you deeply though this time. I pray that you are both able to come to a place of peace over this tragic loss, knowing that God alone understands and is with you both at this time. I do love you so much. I have had a lot of things going down and have not had time to be on facebook lately. I am praying for you both and know that I do not have the words to properly express what I would like to.. Sometimes there are no words, this is one of them. May God’s love and strenth be with you. Love Lee

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  • Anna Brasier

    Warwick and Tan, your story has filled me with much sadness and heartbreak. May you find the light and hope through the dark times. Best wishes, Anna