The power of prayer

“Above the storm, the smallest prayer will still be heard.” -Dolly

I’ve shared so much these last three weeks and I had always imagined in doing so it would help me, my family and all those who care for our family. Little did I know how much hurt and hatred I’d cause in merely expressing myself in less than a week. I’ve been called names like “monster”, “ill educated”, and “sick”. All because I’ve openly and publicly shared the most challenging decision and moment I’ve ever faced in life. I realize not everyone agrees with my belief that parents should have the right to make the decision that is best for their family, however, I never once expected the topic to become quite as heated as it did. Nor did I expect to also cause others, such as all the parents of spina bifida children, any hurt.

But I stand behind every word I wrote and every thought I shared, and will continue to regardless of the decision we make of whether or not we’ll continue this pregnancy. After today I admit I was quite moved, not only because of our medical appointments that we’ve been nervous about, but because through the things posted on my blog it in turned caused the moderator for the baby center group to act in a positive way, to step up to pray for my family along with the many other families affected by spina bifida. At first it was really tough for me to accept when I first learned of it a few days ago. I felt as though I turned to this group for hope and in turn was left with only one sided judgment along with the impression that I offended nearly every singly mother and person affected by spina bifida. That was never my intent. But last night I finally had a chance to read in facebook about the event they created where they began the first “Spina bifida kids worldwide day of prayer” where they hoped everyone would pray at noon. Yes, though it was never my idea for such an amazing gathering of people to pray…there’s no doubt that this wouldn’t have ever happened if it weren’t for the fact that I brought so many very serious and sensitive issues to light that affect every single family ever expecting a baby with spina bifida. Nearly 3,000 people joined in the facebook to show just how many people were touched by this effort. I spent not only most of the day praying…but also crying.

This morning we met with the pediatric neurosurgeon. For some crazy reason our last ultrasound images weren’t recorded in the hospital’s system so it was tough for the neurosurgeon to give us details beyond the “numbers” on paper. She gave us optimism, but said she really wanted to see the images. As I listened to her optimism I began to tear up and paused to tell her we just wanted to know as much as she could tell us and how as much as we believe there’s still hope, the things we had seen during the last ultrasound and what we’ve learned since that appointment have truly scared us. We made it very clear to her that even with as much hope we had, we still had not ruled out termination. She didn’t hesitate to call maternal fetal medicine at Winnie Palmer Hospital to order an ultrasound for today. The hopes were to make it there and then to her office for her opinions after she saw the images and then to head right on over to my OB doctor’s office…all within an hour and a half. We left feeling scared and nervous and still so uncertain of what is ahead.

I think the only thing we left the pediatric neurosurgeons office certain of is that we will NOT be participating in the MOMS research study. She’s well versed in her profession and the entire practice of neurosurgeons have a great deal of experience. She explained that though it’s an option, that in her opinion the benefits have not proven to be worth the risks and that there’s still not enough evidence to proof to make her suggest any patient participate in the study. She made it very clear that if the spine defect is open they will be performing surgery within 24 hours and that overall they have seen positive results in their practice when the defect is low in the spine.

I suppose those that really know me know that I’m a little obsessive with mindmaps. I know I’ve written a lot the last three weeks, but mindmaps really helps me make sense of what is in my mind. I know many of you recall “The Map to my mind” I created last year so I created a less elaborate, perhaps cliff note version to help my mind cope through these thoughts. On the way to the neurosurgeon and then after our appointment in the morning I spent most of the time in between appointments creating mindmaps to help me make sense of my thoughts. I don’t know if they really made sense of anything, but it helped me really soak in the things going through my mind. I share these, perhaps to help you all see just how trying this all has been for me. But also because I realize many of you all think I’m just out trying to justify a reason to terminate my little one. You all have no idea how much this decision has weighed on our hearts and minds. As I stated in twitter today, facing this decision is equivalent to my kryptonite. Yes, I’ve lost track of how many people refer to me as “super woman”…being faced with this news and now this decision leaves me feeling far from “super”. I made a mindmap for my thoughts pertaining to the pros and cons of going fullterm having this child and then one for termination. I think if anything they’ll help you see just how much thought has been put into this decision we are faced with. Countless tears were shed thinking through all these thoughts…I suppose it sums up how much my mind and heart have been through these last three weeks. Not sure if you guys can even read my chicken scratch, but I figured it was worth sharing…



We headed to our ultrasound appointment at Winnie Palmer early. We arrived a whole 45 minutes early because we had to register first. I prayed we’d get to be seen early so that we’d have time to head to the pediatric neurosurgeon and then to my OB appointment. Over an hour passed beyond our appointment time before we were finally seen. I began to feel more helpless wondering how much more could go wrong today. The ultrasound took about a half hour and we got to see our sweet little one once again. It’s heartbeat was only 150 beats per minute today and though it was moving, it seemed much more settled than those first two “wiggle worm” ultrasounds at 13 and 16 weeks. I know you all are anxious to see a new photo of the baby so here’s today’s ultrasound photo of our baby…a view from the front this time.


The baby was being a bit difficult today, but do you blame it, it’s poor mother has been an emotional mess and have to admit I’ve felt nauseous and haven’t had much of an appetite all day. The ultrasound tech confirmed that I likely haven’t felt movement still because the placenta was in the front, between the baby and my belly. My OB believes I should begin to feel movement in the next month. Today the baby was in an awkward position and half the time it’s back and behind were pushed against the placenta so it was tough for them to get the great views like they had 3 weeks ago. Halfway through the ultrasound the doctor in maternal fetal medicine came in to have the ultrasound tech help him take a closer look at certain parts of the baby’s spine and head and talk to us. Instantly he said how it looked to be a very low lying opening, what appeared to him to be in the “sacral” region. Which is said to be a good thing, well, as good as things can be considering there’s way to cure spina bifida. He also said the opening was small. He seemed quite enthusiastic in sharing what he was seeing. He explained the curve of the nerve in the spine is visible and that it is a sign of an “open” spine defect. Though this is not good, it is a positive sign that the opening of the spine appears to be small. I asked him if that would change and if it could get bigger and he said typically it doesn’t change size. He said right now that there’s no obvious signs of hydrocephalus. He said it was a good sign to see the baby’s legs moving and that the feet were not “club” feet thus far, though he said this could change as the pregnancy progresses. He said from what he was seeing he felt the outlook was very good and given that we have a great OB doctor and the neurosurgeons in Orlando are so great that he knew the baby would be well taken care of and chances were better that we’d have a less severe case for the type of spina bifida the baby has. For the first time since this diagnosis we felt a bit of “hope”.

We unfortunately weren’t able to meet with the neurosurgeon again because we were already running late for my OB appointment. I left a message with her office. She in turn left a voice message for us expressing optimism again and said much of what the doctor said during the ultrasound. She plans to call us back in the morning to speak to us more and perhaps that may help calm our fears a bit.

I have to say that my OB doctor and the rest of the nurses and staff are amazing. I called to let them know we were running close to a half hour late and they said it was no problem at all. We were seen pretty promptly. They can sense our stress of the last year and thankfully they’ve been an amazing support for us since this diagnosis. I have to say I’m always surprised to hear when women say their doctor’s mislead them or advised them to terminate, in our case, our doctor and the neurosurgeon both were very optimistic and though they know termination is an option we can consider, they have only tried to help us see the hope ahead as well as preparing us as best as they can for what lies ahead.

My doctor talked to us about both going fullterm and termination. He made it clear that he’ll take the best care of me and if we go fullterm we’d likely plan an induction or surgery date. He said most do have c-sections, but that normal labor isn’t ruled out completely yet. He said if we go fullterm he absolutely will be the one to deliver our baby and that if by chance I go into labor early that he will make sure they all know to track him down, even if he’s off, and that he’ll be there for us. Yes, amazing to say the least. Something tells me that as much as he’s moved us with his care for me through the past year that in turn we’ve likely moved him as well…and yes, it leaves me quite touched. We discussed the option of termination as well, and he reemphasized the 24 week cut off and that if that was what we wanted to do that he would like to know in the next week or two because of the measures he’d have to take on his part beyond just medical care. Right now I admit we are are much more optimistic, however, we have not made our final decision and likely won’t until after we’ve spoken directly with the neurosurgeon and also go through next week’s ultrasound. I have this feeling it may be best to have one more ultrasound to help the doctors really get the best look at the baby, who was definitely being stubborn today.

It was a little easier to breathe leaving the last doctor’s appointment. I admit I was anxious to go home to see my babies. Before heading home we picked the kids up and I was greeted by Hope with this note. Yes, my baby girl knows when my heart is heavy.


I thought I’d leave you all with two songs, of course it’s up to you if you choose to listen. I admit music has held me through the last three weeks and these two songs certainly have been among the ones helping me through these tough moments. The first song I hadn’t heard until yesterday when a friend emailed it to me saying it reminded her of me and what we were going through. Yes, it’s left me in tears.

And Let it be. Regardless of what we decide, somehow, someway I’ll find a way to “let it be”. There will be an answer…let it be.

Hopefully this update helps you all a bit. I know we have many of you out there praying…and well, there’s a power in prayer. I believe it. I know it may not “fix” what we’re up against but somehow, someway, it’ll help us make it through the moments we have ahead. Thank you all again for your support as we faces some of the most challenging moments of our life.

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October 20, 2010 - 10:16 pm

joleen - i love you all and i know that whatever you decide it will be the right thing for your family. anyone who knows you knows you sister

October 20, 2010 - 10:26 pm

Joanna from Indiana - I stumbled across your website a couple of months ago, as I am an aspiring photographer. I think you are very brave for sharing your story. You have truly touch my heart and I look forward to continuing to follow your journey, as well as checking out your awesome photography! I wish you and your family the best with whatever decisions you make.

October 20, 2010 - 10:35 pm

Danielle - Amanda, i am from the babycenter people. I hope i was not one that offended you. I must admit i teared up when i read this and that this post i really think showed you do have hope for your baby and are not simply “looking” for an excuse to terminate. I want you to know your amazing and sacral! thats AMAZING! i know sacral sb babies who have NO problems. I truly believe you have a chance to have one of these babies as you have So many people praying for you! Me included! Feel free to email me at I so wish we lived closer so you could meet my amazing little boy and see how I have not changed my life much since having him. Also Hope’s little notes are just too sweet…I did want to say that I saw in your mindmap where you said you were worried how your kids would feel and from those little notes you get i have a feeling your kids are gonna LOVE their little sister. Stay strong Momma, and listen to God! You are in my prayers tonight!

October 20, 2010 - 10:43 pm

Amanda Kern - Thanks everyone. Danielle I’d say the only thing beyond praying you can do is please tell the SB babycenter mothers to stop beating the horse to death…checked my blog stats today which lead me to a couple new threads. Then briefly check the SB community for the first time since Saturday to hear someone refer to me as “mentally unstable”…definitely not “supportive” of an SB expectant mother if you ask me. But everyone is entitled to their own opinion I suppose and I’ll take the hit if it means I’m creating awareness of choices every family should have. And if it isn’t evident, I do still have plenty of hope…I was never looking for “validation to terminate”. I was told while serving in the army to assume does one thing.

October 21, 2010 - 1:25 am

Yancey Brown - Just wanted to let you know that we are praying for a miracle. We are by your side no matter what.

October 21, 2010 - 10:07 am

Danielle - amanda, i am sorry you have such a negative opinion of us sb moms. i have tried reaching out to you and offering you the answers and support you say you so desperatley want, but you seem to think we are out to get you or something. I tried my best to offer you any support at all, and you keep retaliating rudely and offensively. maybe you should look in the mirror good luck to you im simply erasing this from my mind now….its quite obvious you dont want support from ANY sb mom

October 21, 2010 - 12:25 pm

Lexi - I have to admit all I want to do it reach out to you. Your post was beautiful and it puts me back when I so understood your feelings and that scary place. Keep the faith and stay looking on the bright side. Saying Prayers for you and your family!

October 21, 2010 - 12:44 pm

Amanda Kern - Thank you Lexi we appreciate the prayers. Danielle please don’t take personal offense to that comment, it was not directed to you. However, go back to baby center and read a post someone started titled “My intention was not to offend anyone”. I have stayed away from babycenter until last night when I noticed a link to my blog from a new thread (not from the SB group). I took a moment to visit the SB group for the first time since Saturday and noticed that new thread where the whole situation was beat to death again and now have parents referring to me as “mentally unstable”. Don’t take personal offense to this, however, from a stand point of support…if you were the mother reading these things after truly having good intent I would hope you’d be upset too if you had people saying that and then in the last week being referred to as a long list of negative remarks. Doing this is NOT supportive in anyway. It just belittles someone who truly turned to you all for hope but apparently was hugely misunderstood. Many of the parents still believe I’m misinformed or ill educated…however, if it isn’t evident from this post and the many before, I am far from that. So for me, I am not upset at you all…I just get the vibe that right now it’s best to stay distant from babycenter because the vibe from the past week leaves me unsettled and feeling as though no matter what I say it will upset you all. I thank the many of you, such as yourself for sending positive messages. Many of you have given me hope. I have said this many times. However, this does not eliminate my fears or uncertainty. I still stand behind every thought I’ve shared regardless of what we decide. I think all that was said in the last week was very helpful to myself and others and I have no doubt it will somehow help others for a time to come. I think of all those people in the world who have faced scrutiny and negative opinions for speaking about about things important in the world and though sometimes I wonder if I should remain silent. I think of those people and wonder what this world would have been like if they had remained silent.

October 21, 2010 - 3:25 pm

mn - hi, amanda. i just wanted to let you know that i’ve been thinking of you. i’m a total stranger, but for some reason your heartwrenching situation has struck me, resonated with me in a personal way. though i post under a different name on bbc, i share the same IRL name as your daughter. perhaps that’s it, idk? perhaps it’s bec. i developed a neuro illness as an adult, idk? maybe it’s just bec. i’m a mom, like you, who loves my dc, idk? maybe it’s bec. i’m also creative (writer) and think and write and talk from every angle to clarify my mind, to figure out what it is i really mean (i think that’s why i “got” the idea of the poll). maybe it’s bec. i thought so deeply about TFMR in my last pregnancy (prematurely it turned out). but i continue to explore this issue, as i’m going to ttc again and i’m of AMA. i think about it constantly. it is the most challenging ethical issue i’ve ever faced; i can’t begin to imagine your own extreme turmoil in the midst of dx. as i mentioned before, i’m not religious, but i’ve been thinking about you and your family in a prayerful way, if that makes any sense. i also saw the bbc mention of the SB day of prayer, so i’ve been thinking especially prayerfully about you, the bbc moms and people with SB in general. i’ve taken this opportunity to learn more about SB, which i appreciate. i feel it is always good to educate ourselves about others, especially other w/ different challenges as i have a neuro challenge myself. i saw on your post that the MOMS study isn’t likely to be an option, nor is adoption;so that leaves 2 directions for you to explore. that you received some hope from your appts. is good, though i know you and your family must feel very cautious, very raw and spent. i wish you peace, strength and courage as you continue, through love and wisdom, to search for direction and answers. thinking of you.

October 21, 2010 - 3:26 pm

hm - i posted my board name incorrectly above. it’s supposed to be hm.

October 21, 2010 - 5:55 pm

Jodi - Sounds like things, even though nervewracking and exhausting with the appointments, went GREAT yesterday. What the doctors told you is FABULOUS news… no present hydro, sacral small opening….. I can’t help but believe God LISTENS. I was one literally on my knees yesterday, prompted by the facebook group. And I will continue to pray.

October 21, 2010 - 8:03 pm

Barbara Mitchell - Oh Amanda my heart is breaking for you! I hope you know that if it was in my power I would turn this all around for you and your family.
All I can do is pray and send my notes to God to make the changes needed if it is His Will.
He has promised us that one day all of this will be done away with…Revelations 21:3 & 4 This scripture has giving me so much hope for the past 39 years. I had to make a simular decision in regards to Colette and I thank God it turned out for the best.I was told that she would have an enlarged head and be an idiot.
Her head is enlarged by pride but for some strange reason we love her anyway,lol.
I do not tell you this to try and change your mine, just let you know that I trully understand that you have a diffult decison to make.
Your friend,
Barbara Mitchell

October 21, 2010 - 9:06 pm

A Student From One of Your Classes - Hi, I had your online class last year. I didn’t even know that you were trying for a baby until just now. I am sorry that you did not get the support you needed from the board you were in. Motherhood and pregnancy does tend to be a hot-button issue (heck, there was an article on yahoo where they were talking about the recalls of Similac, and the arguments between those who breastfeed and those who don’t were vicious). Whatever you got to do, do it. I hope that whatever decision you are able to make peace with yourself (sorry about the clumsy wording). And Danielle, please keep in mind that tone is not apparent on the internet.

October 22, 2010 - 8:43 am

Erin - Hi Amanda,

I’m also from BC, but live right here in Orlando. Not sure if you’ve seen my comments on the board, but if I can help you at all let me know. I’d love to meet up with if that would help. I’ve met with other expectant mothers and they’ve told me how calming it has been to see my son in real life. We go to the same OB, and probably the same Neuro practice. My son’s SB is L5/S1…he’s doing so great. Just started walking!

October 22, 2010 - 6:27 pm

Melanie Dilts - Amanda, I know how hard all this is for you. I found your blog thru the Faces of Loss site. I lost 2 boys to prematurity before getting pregnant with my daughter and 2 boys after her. My daughter has a rare form of spina bifida called terminal myelocystocele which occurs in the sacral area. We had no idea anything was wrong before she was born and the first thing we heard was “There’s a problem “- then she cried and I knew we could deal with anything else that popped up. We were told she would never walk without aid, dance, ride a bike or drive a car. She never used a walker etc except after surgeries, she has over 40 dance trophies and can ride a 3 wheeler. She also not only drives a car but doesn’t need hand controls. She is a very loving,talented and intelligent individual. She recently turned 21 and graduated in the top 4 percent of her high school class and fast tracked her Associates degree and was in the top 10% of that class. Only you can make the tough decision you have facing you. I do not fault you in anyway for thinking of all the options. Just wanted to give you a positive look at the possible outcome of going full term. My thoughts and prayers are with you regardless of what your decision might be. Good luck dear

October 22, 2010 - 7:54 pm

Christy - Oh Amanda. My heart continues to break for you. I have been praying for you and have asked many people to pray for you as well. As I said in my comments on a different post, I am a mom of an amazing daughter with SB. I found your blog in a semi random way. I am so sorry that you’re being mistreated by some of the SB moms out there. I know that you just need support and prayers right now. I think this is just so difficult for the SB community because we are all struggling to show that our kids are worth being alive in spite of the things that are different about them. But I have to say that they have no right to call you names! You will continue to be in my prayers.

October 23, 2010 - 1:06 am

Aleina - As someone from “the other side” of this issue, I wanted to say that you are incredibly brave for sharing so much of your process publicly. It is such an intensely personal decision and there are so many factors to consider. Termination is not the “easy” choice, as so many people seem to believe, but it is a different type of struggle. For what it’s worth, our baby’s diagnosis was much more severe (her spine lesion was at T10 or higher and went down into the sacral region, curved spine, already advanced hydro, club feet, etc etc) and I just had a distinct feeling from the beginning that she was never meant to join us in this world. It is the hardest thing I have ever done, and sometimes I feel guilty or angry or bitter, but I don’t ever regret it. I chose to hurt so she didn’t have to.

I hope you can find some peace soon, with whichever direction you choose.

October 23, 2010 - 11:11 pm

Michelle D - I swear, I cry every time I read your blog. I haven’t caught all the way up, but couldn’t help skipping ahead to see how you are doing now. I realize that you guys haven’t made your decision yet, but wanted to share my perspective. When I had Rachel, we knew before she was born that something wasn’t right, but we didn’t know exactly what was “wrong.” They wanted to do an amnio, but I told them no. In my case, there wasn’t anything they could do for her before she was born, and I didn’t want to be faced with the decision that you are faced with now. I had already terminated a pregnancy out of fear of what might be “wrong.” The pain of that decision has never gone away. So when Rachel’s time came, I already knew that no matter what, she was going to be born. So in that regard, I had it easy compared to where you and your family are right now. I cannot imagine.

Someone sent me the story, “Welcome to Holland” after I had Rachel. It is by Emily Perl Kingsley, and is about parenting a Special Needs child. I think that even where you are in your journey; it is something you can relate to, if no one has shared it yet. Embarrassingly, I can’t at the moment remember how to post a link… don’t roll your eyes at me… I have a lot going on and have brain drain. ;)

I guess I am telling you about Rachel because a lot of the things you have on your Mind Maps (both) are things that I think all mothers in this position think, whether or not they want to admit it (most probably wouldn’t admit it). Even though I knew I wanted to have Rachel, it didn’t mean I worried about any of the Full-Term things less, and it didn’t mean that I didn’t think about the things that were on your Termination page either. I had my mind made up and I still struggled.

People always say that God doesn’t give you more than you can handle. That saying always made me feel as though I should be able to handle everything in my life on my own. Someone straightened this out in my mind recently. They told me that God gives you enough so you remember to lean on Him.

If you guys decide to keep your baby, there are resources and good people who can and want to help. Things do have a way of working out – just not as easily or quickly as we sometimes like. And if you guys decide to terminate, it doesn’t make you evil. It makes you human. Keep doing what you do best…being you…and then you will wake up one day…and know.

October 24, 2010 - 5:51 am

A Student From One of Your Classes - I worked at a special needs school. I remember that essay. It can be found here or at Wikipedia.

October 27, 2010 - 6:02 pm

Jamie Lea - This comment is not written to attack or to be flippant. I am writing with love and sincerity from my heart. I am begging you, if you decide that your family is not able to raise your baby, for whatever reason, let me adopt her. I will take her no matter how horrible the prognosis. We are a loving Christian family with four children on earth and two in heaven. My husband is a special education teacher.
Please do not terminate.

October 27, 2010 - 6:10 pm

Jamie Lea - This comment is not written to attack or to be flippant.I am writing with love and sincerity from my heart.I am begging you if you decide that your family is not able to raise your baby forwhateve reason let me adopt her.I will take her no matter how serious the prognosis .We are a loving Christian family with four children on earth and two in heaven. My husband is a special education teacher.
Please do not terminate.

October 27, 2010 - 6:11 pm

Jamie Lea - oops, Sorry about the double post. My computer went wonky on me.

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