Sunday, December 9, 2007


Needed a few days to process. Here's the newsletter we sent to our list of friends and family. Sarah Funk can you please call Christina and Bryce - I don't know if they have internet right now. Thank you so much! - Susie

To our dear family and friends,

Thank you so much for standing with us in prayer, especially yesterday while we were at our appointment. It has taken us some time to digest what we heard, but are finally prepared to let you all know what we were told.

It turns out that Joshua’s encephalocele cannot be repaired. He is not expected to live more than a few hours to a few days after birth. We were led to believe a much more optimistic scenario when we spoke with the doctors at the other hospital, but none of them had operated on, or been in close proximity to, a large posterior encephalocele like Joshua’s. They were apparently misguided in their optimism.

Joshua’s body is measuring fairly close to target at 36-37 weeks, but his head has not grown since 22 weeks. This means that the top of his skull only measures 5cm across, when it should measure 8-9cm. This means the circumference is closer 15cm, rather than the 28cm it should be. The brain tissue present is not “good brain tissue” and although it appears to be there, it’s not going to do it’s “job”. Even if the brain tissue was “good” it would not fit back into his skull cavity.

Before we’re encouraged to seek a second opinion, let me assure you that four specialists from two hospitals conferred on Joshua’s case yesterday and all four came to the same conclusion. We saw a fetal medicine neonatology specialist (specializes in high risk pregnancies), a pediatric radiologist, the lead pediatrician, and the pediatric neurosurgeon from the two best hospitals in New Zealand. The pediatrician and pediatric neurosurgeon are from one of the best children’s hospitals in the South Hemisphere.

We have been told we may birth wherever we like, in reference to the four hospitals in reasonable distance from our home. We have not made a decision in this respect as of yet, and have not made a decision as to the length of time we will wait for him to arrive. The doctor warned us he may go overdue, but we don’t know that for sure. There is a large risk of stillbirth now, and we are very concerned about this. We’ll make our decision based on what’s going to give us the most time with Joshua before he passes away.

Prayer Requests:

*An uncomplicated, natural birth for Susie

*Joshua will live through birth and for as long as possible, so we can spend time as a family.

*Wisdom in deciding the mode, location, and timing of Joshua’s birth.

*Wisdom to decide if we should let Oceana see Joshua.

*Peace in our marriage, our family, and our hearts.


  1. You've been heavy on my heart for days now. How can a little comment on your blog express the feelings I have? It just can't. But know that I will be praying for you as a mother, like only another mother possibly can, but also for you all as a family.
    Anything I say beyond that is insufficient. But I WILL be praying.



  2. My heart aches for you. You've been on my heart a lot lately and now I know why. I'm praying. May God be with you as you make these hard decisions and walk through this heart wrenching time. Be Strong & Courageous!

  3. Oh dear ones, i love you. May God give you the strength and wisdom to know what to do.

  4. In the name of Jesus

    Father bless them and keep them
    Make your face shine upon them and be gracious to them
    Father turn your face toward them and give them peace

    May your peace that passes all understanding guard their hearts and minds in Christ Jesus

    Father, give them the wisdom they are seeking and your strength that is made perfect in our weakness

    Be very close to their hearts and hold them in your loving hands

  5. I don't even know you... and will send my readers to your story so they, too, can send prayers and love and light your way... but I need to encourage you to PLEASE allow your other child to see her brother, whether your precious new baby is born alive or not. Children spend the entire pregnancy in anticipation, too, and they need closure as much as adults, if not more because they don't have the rationalization, the words or the maturity to piece it together the way we do.

    Also, please, please, please take pictures. Spend as much time with your son as long as you need to, WANT TO, don't let anyone take him away from you, whether he has passed to the other side or not. YOU will know when it is time to allow others to hold and take him. Pictures of your daughter holding her brother will be priceless in the future. Pictures of YOU holding your tiny infant will be priceless. If you are concerned about the shape of the baby's head, just put a hat on him as you cuddle and love him during his short time on earth.

    I HIGHLY encourage you to NOT allow them to take your baby and let him spend his last moments in the NICU or in an incubator. He *needs* your hands and love, every second he can have it. Keep your baby close to you all the moments of his life.

    THIS is how I encourage you to find the right hospital. Tell them your wishes and let them say, "yes or no" and then you lay out who will follow your wishes most closely.

    Remember: This is YOUR baby and he is not going to remain on the earth long with you. You deserve to have every wish you desire with regards to him and his life.

    Also, if you are worried about a stillbirth, I *highly* encourage scheduling a cesarean. I know that must seem very odd coming from a homebirth midwife, but it will be the closest guarantee that he will be with you that you can get. If you want to choreograph his last hours, this is one perfect way to do it.

    Please feel free to email me (my email is on my blog) and let me know if I can do anything for you.

    During this painful time, your family will need to make decisions that will last a lifetime. I encourage pictures so much because, strange as it seems, you will eventually "forget" what your baby looked like. I have seen it happen over and over with families who choose not to take pictures. You can always take them, have someone else download and save them on a cd for you and NEVER look at them... than it is to NOT have them, want them and not ever being able to go back.

    I pray for clarity and strength for your beautiful family. The love around you - may it surround you as you find peace and resolution through your precious child's living and passing.

    Barbara E. Herrera, LM, CPM

  6. I am writing from San Diego, CA...

    As a mother of 2, I can only imagine what you have been through, and what you are embarking upon now as a family. From across the seas I will be praying for you and your family. Please take heart at this time of year, and know that the Lord is with you.

  7. Came by way of Navelgazing midwife... I echo her sentiments as to YOU dictating your moments with your precious son. I attended a mother who was only 22 weeks along this past summer.
    The staff were respectful of her wishes. No one even took her child from her for a moment. It is a hard, hard road you are going to journey soon.
    I'm not a terribly religious person... but I will pray for your family to have peace and understanding in this hard time.
    K in Canada

  8. I wish you peace during this difficult time, I can't imagine the pain in your hearts right now, much love and prayers for you all.

  9. Our hearts ache with you.......

    My husband and I held our son as he went to be with the Lord and I want to encourage you. We've had the doctors tell us our son would die when up until then all news was good......

    I echo the words of the midwife who encouraged you to take pictures. Do. Take lots of pictures (/video). You'll be so glad you did. And yes, include your daughter so that the time you spend with this precious little boy will be a memory you all share. Wrap him gently in a blanket and hold him together, savoring every moment God allows you. Let his time on this earth be filled with love and worship of the Almighty God he will soon get to see. And yes, find a hospital that will honor your wishes to the fullest. Every moment matters.

    I want to tell you too that God will give you the grace for each moment. What grace does God promise for the imaginations of our hearts? We imagined how our son's life would end and fear would consume my heart. BUT GOD. When the moment did come, HE was there, pouring out HIS grace in abundant and profound ways. Completely sufficient. When our son went to be with our Lord we were (in part) joyful. Happy for him. Rejoicing in the (all-too-short) time we had shared with him. Blessed to know he was welcomed into the arms of our Heavenly Father who would give him a life we never could. Oh, we HURT SO MUCH....... but somehow God....

    We are praying for great grace and wisdom for you as you go day by day. I assure you, He will never leave you or forsake you. He will never leave your side. We know it beyond a shadow of a doubt.

    Across the miles.....

  10. Hey Mama.
    Susie I love you so much. I wish more than anything I could be there with you all right now. I'll be praying for wisdom for you and Matt, and for comfort. I wish i could just give you a huge hug make it all better. I just want you to know I'm praying for you and missing you always. Give Oceana kisses for me and have her kiss Joshua for me. I love you guys.

    Aunt Havie

  11. I am so sorry you are going through this terrifying time. I pray you find joy in the life that you have been given.

    Please consider reading about a special family I know personally. They lost their baby within an hour after his birth, they knew they would probably loose him quickly. His name is Zeke, and he really touched many lives though he lived only a short time. His parents had a c-section, they got time with him that way...


  12. I don't know you. I just have seen Tarah's many posts about your baby and I wanted to let you know that there are people who have you in their thoughts and prayers (even though we don't even know each other). I'm very sorry for what you are going through, and I know beyond any doubt there is nothing that can be said to make you feel better. I will continue to pray for you, and may God comfort you during this time and guide your decisions.

  13. I can't give you any advice, only my love and prayers, which seems like far too little. There is another mama I frequently read,


    ...who lost her Abby at birth and has been grieving and loving her online ever since; that link leads to all her posts about Abby, about the pictures she took, about her grief, and her joy at having another child soon therafter.

  14. Hi Susie, My wife and I wanted to contact you. Two years ago we had a little girl with the very similar rare encephalocele. We have recently been through this and pray that we can be of some help. Please contact us at bnbowesmd AT pol DOT net. Brian and Elizabeth

  15. Hi,
    I'm Annemarie, an independent midwife practicing in the lower North Island. I came here from navel gazing midwife, not knowing you were in NZ. I'm so sorry to hear about your baby, many moons ago my SIL had a baby not expected to live, but he lived for several hours and gave the family time to create some memories and say good bye. If I can be of any assistance please do not hesitate to contact me. I'm in the Masterton phone book.

    Annemarie Gibbs, RM.

  16. I am praying for strength and wisdom for your family. We never know what God will trust us. We wish it could always be the good but sometimes he trusts us with something as challenging and heartbreaking as what your family is going through. Please know that your story has moved many to keep you in their prayers.

  17. There is much I could say but I won't because my emotions are too raw today! Please know that we love you guys and wish we could be there to hug you through this. We are at peace knowing the Lord will carry you through this time, and will give you wisdom on all the decisions you need to make. Whatever happens please know GOD IS IN CONTROL! We may not understand Him but we can trust Him!

    Love & Prayers, Pastor Roy & Pam

  18. All I can say is that I'm praying for you.

  19. Hi, I came here thru Navelgazing midwife too.
    Praying in Canada

  20. Susie, Matt and O
    I just found your blog after looking at Tarah's and Seth's.
    Know that we are with you there in NZ. As I was reading your last post I couldn't help but think back to sitting in class with Matt during Bro. Hugh's Grief class. Bro. Hugh said there are times when we just need to be quiet. This is one of those times. You know we love you and miss you. Our hearts are with you but that is not enough. We miss you guys. "Hammer" drop me a line when you get a chance.