A Time To Choose

This is one of those posts that I’m writing well before I’m ready to actually put it up. So by the time you’re reading this, it will be over, or as over as it can be.

As I said in the last post, we had a doctor visit scheduled on the 3rd (at 30w5d), which started off with another ultrasound. This one was just 2 weeks after the previous, which is close enough that the ultrasound tech wasn’t even sure she should bother taking measurements, because that’s not long enough to show much growth. However, the ventricles had enlarged significantly, to the point that the larger was up into the 40+ range. Worse, her head had not grown, and the increased fluid had further compressed her brain, so that the damage is now catastrophic. The neurosurgeon said that at this point the odds were in the “high 90’s” that she would never progress mentally beyond infancy. And she still had at least 3.5 weeks left before she could be delivered and the ventricle growth halted, so it would only get worse.

I don’t have any copies of her scans (nor do I want them), but a quick google search turned up some images that are comparable. The first is a moderate hydrocephalus. The fluid is the black area, and the surrounding grey is brain. The second is very similar to what we saw at this appointment. Basically the entire top half of her skull is full of fluid, so that the image is almost all black, with virtually no grey left at all. Her scan actually had even less grey around the edges than this image does.

HC Coronal 5

HydroSev

This news left us with three options. One, we could deliver at 34 weeks as planned, have the shunt inserted, and simply see what happened. More than likely she would survive, because her brain stem was still unaffected (meaning she would still breathe and her heart would beat, etc). When the brain is that severely compressed, there is some risk that when the pressure is relieved by the shunt, the brain will spring back too quickly and tear the blood vessels supporting it. But the odds of that are only around 10%, so she would probably live. But she would have no quality of life, no higher brain function, no ability to live in any sense of the word that truly matters.

Our next option would be to carry to term, and let nature take its course. No shunt, or other form of drainage to stop the hydrocephalus. Again, she would likely live, but in this case not for long. It’s impossible to say how long it would take, but eventually the pressure would destroy the rest of her brain, and she would die. It would be a short and probably painful life, and cruel to both her and those of us who care about her.

Which leaves us with the third choice. We could go Colorado or New Mexico, and we could terminate the pregnancy. It has to be done before 34 weeks legally, and even then we have to provide proof that this is a case of medical necessity. But it would be quick, for her, just an injection to stop her heart. For us it’s a four day process, starting with the injection, followed by two days of gradually opening the cervix, and ending with what basically amounts to a glorified D&C. Of the three choices, it’s the one that is hardest on us, at least emotionally. There would be no chance to hold her, or to ever see her alive other than on an ultrasound screen. But of the three choices, it’s the one that’s best for her. It gives her the grace of a quick death, instead of a protracted, painful one, or a life that offers her nothing at all.

And so we’re now in the process of setting things up for a trip to Colorado. My doctor here (who has been amazing) provided us with the information for a doctor there who will do the procedure. As it turns out, there are only three doctors in the country who will. The risk is just too high. There used to be at least one more, but he was murdered, while at church, ironically. We had planned to handle it as quickly as possible, but the doctor is out of the country for the next couple of weeks, so we have to wait for him to get back.

It also turns out that the whole thing is more complicated than expected. Growing up (in a highly conservative environment), I always had this thought that there were women out there getting late term abortions all the time, for no good reason. Turns out, as I mentioned, you have to provide (fairly extensive) proof that it’s medically warranted. It’s also far more expensive than we expected. They need her exact size to give us an official price, but the initial estimate is $25,000, which unlike most medical procedures where you simply deal with the bill later, must be paid up front. Thankfully for us, our insurance will cover it, but the standard procedure is for us to pay and then send the bill to insurance for reimbursement. Since there are no providers “in network” that do the procedure, our insurance company would be obligated to reimburse us for only whatever they thought reasonable, and leave us with the rest. But we’re fortunate to have very good insurance, and Christopher is working with them to get an exemption (to basically count this doctor as in network), which will leave us only responsible for our deductible. He’s also getting it pre-approved so that they’ll pay it up front, so that we don’t have to find a way to come up with $25,000 in the next two weeks.

I don’t know what we’d do if our insurance didn’t cover it. There is an organization (a charity of some sort, I assume) that helps with the costs in situations like ours, but it’s based on income. We make enough that I doubt they’d be able to do much for us. And we’re responsible for our travel costs no matter what, not to mention the vacation/sick leave/whatever (possibly bereavement leave) Christopher will have to use for the week that we’ll have to be gone. It makes me really, really angry that it’s so hard. This situation is incredibly difficult already, and added to that is a ton of financial worries, travel, and stress, so that we can go to an office where every single employee is risking their life every day just by doing their job and helping people like us who are facing an impossible choice. We’re not just some flighty kids that made a baby and then decided that maybe we don’t want to deal with it after all. We aren’t making this decision because we’re unwilling to raise a child with special needs and want to scrap this attempt and try again. This is a baby that is badly wanted, but whose medical situation is so dire that the only kindness we can offer her is to let her go as quickly and painlessly as possible. We shouldn’t have to go through so much to do something that’s already the hardest thing we’ve ever had to do. And the people who are helping us should be seen as heroes, not murderers.

As far as how we’re doing otherwise, we’re holding up pretty well. Christopher has spent plenty of time with me, including taking some extra time off work. Right now I don’t think it’s really sunk in. There were some tears when we first found out, but not really since. I think that will come when we have to actually say goodbye, and go through with it, and continue on without her. Thankfully Christopher hasn’t tried to pretend she’s already gone. He still wants to feel her move and talks about her. Part of me does want to put on baggy clothes and pretend I’m just fat, but it wouldn’t be right. We have the whole rest of our lives to mourn her, but we only have these last couple of weeks to be with her.

We did have maternity photos done. We wouldn’t have, but my amazing sister-in-law put the whole thing together. They have a cousin who lost a baby under similar circumstances, and she told my sister-in-law that we would regret it if we didn’t do it. So she called around and found us a photographer willing to meet us last minute (on a Sunday, no less), and a hair stylist who touched up my highlights and did my hair, and even a makeup person. She also paid for the photographer (the other two worked for free for us, though I tipped them). It was kind of hard to do, and I don’t exactly expect I’ll want to keep the pictures displayed to look at all the time, but I’m really glad we did it. This might be our only pregnancy (we may pursue adoption, though we’re not really thinking that far ahead right now), and I think the cousin is right that I would have regretted not having the pictures as a sort of remembrance.

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We did box up all of her things today. We are keeping pretty much everything for a future baby. To us they’re for our baby (and we will have one someday, one way or another), not for her specifically. I did choose not to use any as props in the maternity photos for that reason. That would have made them actually hers. The only exception, I think, will be the blanket my cousin made for her. For whatever reason, that feels like it should be kept special. I’ll have that, and I’ll be getting some sort of Christmas ornament as well. I never did get one for the miscarriages (I might yet), but she needs one.

Christopher’s also getting me a ring with her birthstone, to wear with my wedding and engagement rings. It’s what I’d planned for any babies we had, this will just be in remembrance instead of just acknowledgement. We’re going to go with ruby, the July birthstone. She was due in September, then planned for August, and eventually July, so it’s hard to say which one is really appropriate. But the last date we were planning for her birthday was July 27th, and that’s the day I want to commemorate. September, I feel like, fails to acknowledge everything we went through, and in August we just had a general idea, not a specific date. I don’t want the day we terminate to be the one we choose to remember either, so as far as I’m concerned her birthday is July 27th.

The choices that we are being forced to make will be controversial, but I’m not going to try to hide them either. It’s not fair for us to have to live with this as some big secret, nor do I think it’s something shameful or wrong that merits secrecy. And I’ve blogged all this so far in case someone else who is going through something similar finds it, and finds some comfort in it, and some reassurance that I, at least, understand what they’re going through, and there is no judgement here. I’m not ashamed of what we’re doing. I don’t have doubts that it’s the right thing to do. It’s not a selfish choice. If I was being selfish I’d carry her to term, and have those days or weeks or months with her. Or maybe even deliver early and have her get the shunt, and risk her never having any sort of life for the sake of that maybe 1% chance that she would be, not okay, but not quite as bad as the worst case. I don’t want to give up the only time I can have with her. But our job as parents is to do what’s best for her, even when it means letting her go. And I’m not going to apologize for that, or try to hide it.

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Her name is Katlyn River.

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17 thoughts on “A Time To Choose

  1. We all have different opinions on this. And I know I dont know you and you dont know me. But everything is in God’s plan and you aborting her is messing up with God’s plan. I think you should pray very hard about this. I have a good friend that back in March had this same thing happen where the scan showed this and there was a brain bleed. They didnt know what was going to happen. They did a c-section few weeks early. Her beautiful daughter had an mri later on that evening. The scan was perfectly clear. She just had another scan 2 wks ago and again it was perfectly clear. We dont know what or why these things happen but we need to trust in God. These words might not help you but I pray that they will. If you would like I can give you my friends name and number. I know she would love to talk about this. The doctors were astonished about the scans. God had something else in mind for her sweet Kinley. I will pray for you and your husband in this time.

    • I’m not sure if you’re trying to talk us out of it, but just to be clear, this is already done and over with. And we don’t have any doubts that we made the right choice. A brain bleed is very different from a hydrocephalus. Her brain was gone, and it wasn’t coming back. Actually, by the time of her final ultrasound, her hydrocephalus had progressed much further than when I wrote this. And while I’m not religious (so urging me to pray about it isn’t going to accomplish much), I do appreciate any prayers during this difficult time, and thank you for maintaining a civil attitude despite your disagreement with our choices.

  2. First of all, these are decisions no parents should have to make :/ I know you have no regrets and there will be people who will never understand, but I applaud you for standing your ground. ❤️

  3. Thank you so much for sharing your story. I know it must be impossibly hard to do so. Just know that regardless of what anyone thinks (i.e. craftyfun) you made the RIGHT decision because it was your decision. You will be a wonderful mother one day to a beautiful child and you’ll get to enjoy everything that motherhood has to offer. I wish nothing but the absolute best for you and Christopher. Keep sharing your journey, I promise it’s helping other women in similar situations.

  4. Thank you for sharing your story. It is yours and no one else’s. Praying for you as you walk this journey.

  5. I am so sorry for your loss. No one has any right to sit in judgement of this decision you have had to make.I will pray for you, and I hope you will have many supportive people around you as you heal physically and emotionally from this terrible loss.

  6. My heart breaks for you at facing such a decision. It’s one no parent should ever have to make. I once also stood right where you have stood. There’s no way to describe that feeling of utter helplessness and grief that comes along with a diagnosis that says the baby that you want and love might not live. When I stood in that place, I made a different choice and for different reasons but that’s not pertinent here I don’t think. I do understand your decision and sympathize with you. My little boy is now 3 and very healthy and happy. I hope no one is rude to you for the decision you made because I can tell that it was sincerely made out of love for your child. I guess all that to say, that I hope anyone who reads this post will be understanding to you. I also want to say to others who might be reading, that there isn’t always regret in doing what you can to fight for your child to live as well. It doesnt mean you are selfish if you do what you can for your child to live. And also, that having a child with special needs isnt the worst thing in the world(not that you implied it was); that even children who are born with disabilities do have a high value and are so important, and that quality of life is not always determined by a disability. Raising a child with a disability has been the greatest and highest honor I’ve ever had. I made the choice to fight for his life, to do everything in my power to help him, and there are no regrets. I am now raising a little boy with special needs who loves his mama, laughs non stop, and gives the best good morning hugs you could imagine. ( I have tried as best I could to say this respectfully and compassionately. If anything came off as otherwise to you, it was not meant to be. I also don’t mean to imply that you think children with disabilities are not valuable, or that you acted selfishly, so please don’t hear that. I know that your decision was not made easily or without much thought and heartache. I can tell that’s not what you meant. I have the utmost respect for you as a person and mean nothing mean or disingenuous or hurtful at all. I just wanted to say this just in case, because I would never come here to attack you. Someone shared this blog with me because they do know my situation and I would never post here to be rude or attack you.) Much love and respect to you. I pray that you’re healing (I hope that doesn’t sound like I’m minimizing your pain. I can’t imagine the pain, I just sincerely hope that you are doing well) and that one day you will get the chance to hold a child of your own! 🙂

    • I’m very glad to hear your story was able to have a happy ending. I wish they all could. Unfortunately our situation was far more dire. Her brain was gone. There would have been no happy, laughing toddler, just what would have been pretty much a step above a vegetative state, since she would have been awake, but not much more. I never had a chance to write much about it, but we were fully prepared to raise a special needs child from the time we first found out about her hydrocephalus at 20 weeks. We had started making contacts with people who could help and researching how best to get her the therapies she’d need. I just hadn’t written about it because we didn’t know (and wouldn’t have till after 3 months or later) how severe it was likely to be. And, of course, I thought I’d have the whole rest of her life to write about that aspect, so I was focusing more on the pregnancy at the time.

      We really do represent the worst case scenario for a fetal hydrocephalus though. I’m glad to have a comment on here from someone who was able to have a happier outcome. I don’t want someone who has just received a diagnosis of hydrocephalus to come here and think that it’s all over. Our outcome is very rare, so hopefully they can read your comment and feel hopeful.

  7. I write this as a pro-life woman: your story is heart-wrenching. If it were me, the stories of babies that ended up OK would be salt in the wound. Please accept my condolences for your tragic loss; my thoughts are with you, your husband, and River – I don’t know that I will think of much else today. You have a lot of guts to share it publicly, but it makes sense that you would also need to be honest and open.

  8. God had a plan. Its beyond our thoughts and understanding. He performs miracles daily but you didnt give Him that chance. I am so sorry for your loss. I wont be responding to all the hate I will get. She posted a blog opening up the door for everyone to express their opinions, including me.

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