Terrified and sad
August 27, 2013 10:37 AM Subscribe
How to deal with devastating and terrifying news about my unborn baby?
I'm 13 weeks pregnant and yesterday we went to a very comprehensive ultrasound. We were told our baby almost surely has a congenital diaphragmatic hernia. We are shocked and terrified about our future prospects and while we have good doctors and know we will have to take this one step at a time, I would like to ask the MeFi community for help about how to deal with this. We are telling our direct family and close friends, but how do we deal with those who know I'm pregnant but are not going to be told about this? How do I deal with my own pregnancy now that I'm filled with fear and most of our planning-for-the-baby illusions have been taken away from us? How do I not shut my husband out, when that's what I tend to do with this sorts of things?
We've had two miscarriages before, both at 8 weeks. Then we had a successful pregnancy and now have a very healthy 18 month-old boy. Yesterday was supposed to be about finding out if everything was in order and see if we could discover the baby's sex. Now I don't know what to do. I appreciate your help in any form, anecdotes, resources, books, whatever. Thanks in advance.
I'm 13 weeks pregnant and yesterday we went to a very comprehensive ultrasound. We were told our baby almost surely has a congenital diaphragmatic hernia. We are shocked and terrified about our future prospects and while we have good doctors and know we will have to take this one step at a time, I would like to ask the MeFi community for help about how to deal with this. We are telling our direct family and close friends, but how do we deal with those who know I'm pregnant but are not going to be told about this? How do I deal with my own pregnancy now that I'm filled with fear and most of our planning-for-the-baby illusions have been taken away from us? How do I not shut my husband out, when that's what I tend to do with this sorts of things?
We've had two miscarriages before, both at 8 weeks. Then we had a successful pregnancy and now have a very healthy 18 month-old boy. Yesterday was supposed to be about finding out if everything was in order and see if we could discover the baby's sex. Now I don't know what to do. I appreciate your help in any form, anecdotes, resources, books, whatever. Thanks in advance.
Oh, I should say that I also found a terrible support group when I was dealing with a specific problem with one of my kids -- a few of the people were very religious, and when I politely asked if they could be less evangelical the moderators put me on probation.
Looking back on it I'm amused, but at the time it was just more stress and rejection at a time when I didn't have many resources. So don't get too emotionally involved in a group, not until you know it's the right one for you.
posted by The corpse in the library at 10:49 AM on August 27, 2013 [5 favorites]
Looking back on it I'm amused, but at the time it was just more stress and rejection at a time when I didn't have many resources. So don't get too emotionally involved in a group, not until you know it's the right one for you.
posted by The corpse in the library at 10:49 AM on August 27, 2013 [5 favorites]
I'm so sorry to hear about this. It's sad and scary, but based upon that article, there's hope.
Feel free to freak out! Invite your husband to freak with you. I would get the word out to all and sundry about your situation. Send a mass email to your friends and family.
Dear Friends and Family,
We have received some scary news about our baby. He appears to have CDH which is (see article.) We know that we have great doctors and excellent hospitals and we are going to do whatever we can to deliver as healthy a baby as possible. We need your thoughts and prayers now. Also, while we need your support at this time, we're not really up to discussing the details and the ins and outs of this diagnosis. Thank you in advance for your help and understanding.
You are doing this to keep excited well-wishers from calling you up to ask mundane questions about the baby.
Now, people are going to want to help, because that's what we do when we fell helpless. So let folks babysit your toddler, cook you meals, clean your kitchen.
As for you and your husband, tell him now, "I'm so upset and worried and I'm full of hormones. I don't want to shut you out, but you know how I am. I love you and we'll get through this."
If you can seek out counseling, together and separately. Here's a resource, perhaps there's a support group in your area.
We don't know what the future holds, and whatever decisions you make are the right ones for your family, but just know that while this is a hurdle, it doesn't necessarily have to have a tragic ending.
I'll be praying for you.
posted by Ruthless Bunny at 10:52 AM on August 27, 2013 [39 favorites]
Feel free to freak out! Invite your husband to freak with you. I would get the word out to all and sundry about your situation. Send a mass email to your friends and family.
Dear Friends and Family,
We have received some scary news about our baby. He appears to have CDH which is (see article.) We know that we have great doctors and excellent hospitals and we are going to do whatever we can to deliver as healthy a baby as possible. We need your thoughts and prayers now. Also, while we need your support at this time, we're not really up to discussing the details and the ins and outs of this diagnosis. Thank you in advance for your help and understanding.
You are doing this to keep excited well-wishers from calling you up to ask mundane questions about the baby.
Now, people are going to want to help, because that's what we do when we fell helpless. So let folks babysit your toddler, cook you meals, clean your kitchen.
As for you and your husband, tell him now, "I'm so upset and worried and I'm full of hormones. I don't want to shut you out, but you know how I am. I love you and we'll get through this."
If you can seek out counseling, together and separately. Here's a resource, perhaps there's a support group in your area.
We don't know what the future holds, and whatever decisions you make are the right ones for your family, but just know that while this is a hurdle, it doesn't necessarily have to have a tragic ending.
I'll be praying for you.
posted by Ruthless Bunny at 10:52 AM on August 27, 2013 [39 favorites]
I'm so sorry you got such upsetting news at what should have been a routine visit. This happened to me, too so I have anecdotal advice to offer and my utmost sympathy. My last pregnancy, I spent on bed rest with a baby that had a chromosome disorder. If I could go back and offer my advice, my top three suggestions would be:
1) Have a teller-- somebody to let the rest of the family know and to run interference for you. This should be a friend or a close family member, absolutely not you or your husband. Explain the situation to them as best as you can, and ask them to share the news as well as an admonition that any concerns or advice should go through them.
Everyone will be concerned and upset. Many of these people will want to try to make it better by reading more information or offering advice, or pre-catastrophizing for you. While it's totally acceptable for them to emotionally process this news in any way they need to-- your teller needs to make it clear that the only thing you need to hear from them is unconditional support.
It's a burden to have to reassure other people when something bad happens to you-- make sure your teller lovingly underlines that for everyone else around you.
2) Only read enough to be informed. Read the Mayo Clinic site. If there's a specialized group for this CDH, read their literature as well. But fight the urge to read about worst case scenarios, about research, about future possibilities, anything like that.
It's important to be informed so you can make good decisions. But you can upset yourself, make a bad situation more stressful, and make things feel more hopeless than they are by reading every single thing anybody ever wrote about the condition ever. This is probably going to be especially important for your spouse, since he may feel the need to do something.
3) Don't forget that you and your husband are in this together. You're already aware you don't want to shut him out and that's good. But also remember that you don't have to be strong for him. You guys can be strong together and weak together, and strong and weak intermittently.
He has no idea how your body feels; he's going to feel like you have more information than he does nearly all of the time (even though you won't really). So talk to him about how you're feeling, and your feelings. Likewise, let him be scared and talk about his feelings too.
Sometimes it's hard to separate just talking with "trying to fix it" so make sure you check in with each other often. Reassure each other that you're just talking about the situation, so no one feels responsible for fixing it.
Hang in there; I wish you and your family the best during this trying time.
posted by headspace at 10:54 AM on August 27, 2013 [29 favorites]
1) Have a teller-- somebody to let the rest of the family know and to run interference for you. This should be a friend or a close family member, absolutely not you or your husband. Explain the situation to them as best as you can, and ask them to share the news as well as an admonition that any concerns or advice should go through them.
Everyone will be concerned and upset. Many of these people will want to try to make it better by reading more information or offering advice, or pre-catastrophizing for you. While it's totally acceptable for them to emotionally process this news in any way they need to-- your teller needs to make it clear that the only thing you need to hear from them is unconditional support.
It's a burden to have to reassure other people when something bad happens to you-- make sure your teller lovingly underlines that for everyone else around you.
2) Only read enough to be informed. Read the Mayo Clinic site. If there's a specialized group for this CDH, read their literature as well. But fight the urge to read about worst case scenarios, about research, about future possibilities, anything like that.
It's important to be informed so you can make good decisions. But you can upset yourself, make a bad situation more stressful, and make things feel more hopeless than they are by reading every single thing anybody ever wrote about the condition ever. This is probably going to be especially important for your spouse, since he may feel the need to do something.
3) Don't forget that you and your husband are in this together. You're already aware you don't want to shut him out and that's good. But also remember that you don't have to be strong for him. You guys can be strong together and weak together, and strong and weak intermittently.
He has no idea how your body feels; he's going to feel like you have more information than he does nearly all of the time (even though you won't really). So talk to him about how you're feeling, and your feelings. Likewise, let him be scared and talk about his feelings too.
Sometimes it's hard to separate just talking with "trying to fix it" so make sure you check in with each other often. Reassure each other that you're just talking about the situation, so no one feels responsible for fixing it.
Hang in there; I wish you and your family the best during this trying time.
posted by headspace at 10:54 AM on August 27, 2013 [29 favorites]
My friends who had a child with a genetic disability which ended her life at age 3 sent an email like Ruthless Bunny's telling us exactly what they wanted us to do and what not to do. That helped a lot- knowing they wanted "hey how's it going, didja see thst baseball game" type emails not the "how is yr baby?!?!" emails, that only Dad would talk about the kid not Mom, that they wanted meals and cleaning help but did not need more stuffed animals. Another coworker had a high risk pregnancy. She simply told us all at a staff meeting that the baby had some risks and doctors were concerned, but that she wanted us to not bring it up and if she ever looked weepy after a doc visit, to give her 30 minutes to recover and she'd do her best to get it under control.
In good news both families i discuss here are now doing great- a second healthy baby for family #1 and a fine baby despite a risky pregnancy for #2. I know you and your family will handle this well no matter what and I am sending virtual hugs to you right now. You're not alone cause mefi's got your back.
posted by holyrood at 11:06 AM on August 27, 2013 [7 favorites]
In good news both families i discuss here are now doing great- a second healthy baby for family #1 and a fine baby despite a risky pregnancy for #2. I know you and your family will handle this well no matter what and I am sending virtual hugs to you right now. You're not alone cause mefi's got your back.
posted by holyrood at 11:06 AM on August 27, 2013 [7 favorites]
headspace: "2) Only read enough to be informed. Read the Mayo Clinic site. If there's a specialized group for this CDH, read their literature as well. But fight the urge to read about worst case scenarios, about research, about future possibilities, anything like that. "
This is especially good advice, and I just wanted to underscore it.
posted by jquinby at 11:10 AM on August 27, 2013 [12 favorites]
This is especially good advice, and I just wanted to underscore it.
posted by jquinby at 11:10 AM on August 27, 2013 [12 favorites]
I'm so sorry you are having to go through this.
One area where friends may be able to use their instinct to want to help is in making sure that you have a babysitting / care rota for your toddler. That will take a lot of stress off of you, knowing that if doctors' appointments run over or you are feeling unable to cope with cheerful-toddler playtime because you are stressed or overwhelmed, someone you trust can take toddler CrazyLemonade to the park and or the zoo or just come by and play with him.
Make it clear what you might need in the email discussed above - get a team on your side so that you can focus on coping with what you need to do without worrying constantly about toddler CrazyLemonade and toddler CrazyLemonade can feel cared-for by people he knows and loves while you are busy or preoccupied.
posted by Wylla at 11:16 AM on August 27, 2013 [1 favorite]
One area where friends may be able to use their instinct to want to help is in making sure that you have a babysitting / care rota for your toddler. That will take a lot of stress off of you, knowing that if doctors' appointments run over or you are feeling unable to cope with cheerful-toddler playtime because you are stressed or overwhelmed, someone you trust can take toddler CrazyLemonade to the park and or the zoo or just come by and play with him.
Make it clear what you might need in the email discussed above - get a team on your side so that you can focus on coping with what you need to do without worrying constantly about toddler CrazyLemonade and toddler CrazyLemonade can feel cared-for by people he knows and loves while you are busy or preoccupied.
posted by Wylla at 11:16 AM on August 27, 2013 [1 favorite]
I'm sorry that you've received this news.
I understand.
Society, on the whole, loves healthy babies. When you have something that doesn't fit into that category, then you discover that your news gets responses in a few categories. It's really quite surprising how polarizing this news is.
My daughter was born with surprise Down syndrome and shortly after birth had a stroke, leaving her with hemiplegia and cerebral palsy. We got all of the above. Why resonated the most in what you wrote was "most of our planning-for-the-baby illusions have been taken away from us". Here are a few things that I wrote that might help (1, 2).
Early on in our daughter's life, we got forwarded many copies of "Welcome to Holland" and I know people who love it. I do not care for it. I prefer The Ten Commandments for Helping Parents of Children with Special Needs. I won't go into detail why, but leave you to decide if either resonates.
I will offer these two last things: (1) any decision you make with open eyes is the right decision for you (2) be open to being surprised (if, at her birth, you told me that my daughter would dance ballet, I would have not believed you).
posted by plinth at 11:25 AM on August 27, 2013 [16 favorites]
I understand.
Society, on the whole, loves healthy babies. When you have something that doesn't fit into that category, then you discover that your news gets responses in a few categories. It's really quite surprising how polarizing this news is.
- Acceptance and love - these are the people you want to hold on to.
- Baffling lack of acceptance - people who you would think would be accepting who are quite the opposite.
- Stymied - this is the majority of people, quite honestly. They don't really know what to say or are afraid to say something insulting so they say nothing or appear distant.
My daughter was born with surprise Down syndrome and shortly after birth had a stroke, leaving her with hemiplegia and cerebral palsy. We got all of the above. Why resonated the most in what you wrote was "most of our planning-for-the-baby illusions have been taken away from us". Here are a few things that I wrote that might help (1, 2).
Early on in our daughter's life, we got forwarded many copies of "Welcome to Holland" and I know people who love it. I do not care for it. I prefer The Ten Commandments for Helping Parents of Children with Special Needs. I won't go into detail why, but leave you to decide if either resonates.
I will offer these two last things: (1) any decision you make with open eyes is the right decision for you (2) be open to being surprised (if, at her birth, you told me that my daughter would dance ballet, I would have not believed you).
posted by plinth at 11:25 AM on August 27, 2013 [16 favorites]
I sincerely apologize for being blunt, but I would talk to a neonatologist about the worst case scenario and what kinds of choices you might be faced with if your baby's case is quite severe. It's an awful conversation to think about, or to have, but it is better to be prepared.
Talk to your OB and/or neonatologist about how this plays out. Ultrasound is pretty amazing these days, and it may be that as your baby grows, you will have a good idea of the status of the condition, which will help you prepare.
How do we deal with those who know I'm pregnant but are not going to be told about this? Like a politician, respond to the question you want to answer. O gosh, pregnancy is awfully tiring, especially with a toddler at home. The humidity's making me miserable, and I still have N months to go. Thanks so much for asking. If anyone knows about the condition, and you don't want to discuss it, I'm kind of talked out about it, and then change the subject.
Definitely appoint someone sensible as your PR person, who can update people on status. When people ask what they can do to help, ask for real help.
We're expecting the 1st month or 2 to be pretty intense. There's a schedule for dinners and other help; contact Jay if you want to sign up.
Honestly, the best help would be prayer, and not too much advice. We're getting inundated.
When people offer well-meaning advice like, Have you checked out this supplement, that surgeon, crystals ... Let me stop you. I'm overwhelmed by the sheer quantity of information and advice that's come our way. If you have something to share, please talk to Chris; she's helping us research stuff. I'm truly appreciative, but it's exhausting and keep in mind that offers of advice come because people genuinely want to help because they care about you.
My advice? Decorate the baby's room and do other tasks the way you did before. Plan and act as if this will be the best-case scenario. Worrying about the possibilities, which you'll do, of course, won't help, so try to keep a positive attitude. Maybe affirmations or prayer would help you keep your mind away from the scary places. I'm not at all religious, except for prayer. If nothing else, it's a good meditation technique, and directing positive energy to your baby can't hurt. Plinth's advice is excellent. Sending you a hug.
posted by theora55 at 12:36 PM on August 27, 2013 [3 favorites]
Talk to your OB and/or neonatologist about how this plays out. Ultrasound is pretty amazing these days, and it may be that as your baby grows, you will have a good idea of the status of the condition, which will help you prepare.
How do we deal with those who know I'm pregnant but are not going to be told about this? Like a politician, respond to the question you want to answer. O gosh, pregnancy is awfully tiring, especially with a toddler at home. The humidity's making me miserable, and I still have N months to go. Thanks so much for asking. If anyone knows about the condition, and you don't want to discuss it, I'm kind of talked out about it, and then change the subject.
Definitely appoint someone sensible as your PR person, who can update people on status. When people ask what they can do to help, ask for real help.
We're expecting the 1st month or 2 to be pretty intense. There's a schedule for dinners and other help; contact Jay if you want to sign up.
Honestly, the best help would be prayer, and not too much advice. We're getting inundated.
When people offer well-meaning advice like, Have you checked out this supplement, that surgeon, crystals ... Let me stop you. I'm overwhelmed by the sheer quantity of information and advice that's come our way. If you have something to share, please talk to Chris; she's helping us research stuff. I'm truly appreciative, but it's exhausting and keep in mind that offers of advice come because people genuinely want to help because they care about you.
My advice? Decorate the baby's room and do other tasks the way you did before. Plan and act as if this will be the best-case scenario. Worrying about the possibilities, which you'll do, of course, won't help, so try to keep a positive attitude. Maybe affirmations or prayer would help you keep your mind away from the scary places. I'm not at all religious, except for prayer. If nothing else, it's a good meditation technique, and directing positive energy to your baby can't hurt. Plinth's advice is excellent. Sending you a hug.
posted by theora55 at 12:36 PM on August 27, 2013 [3 favorites]
Plinth: Early on in our daughter's life, we got forwarded many copies of "Welcome to Holland" and I know people who love it. I do not care for it.
Yes, I'm sure Welcome to Holland was written with the best of intentions, and the people who pointed me to it did so with the best of intentions, but it gets tiresome.
Plinth's advice is good advice. Ruthless Bunny has good suggestions. headspace's suggestion (only read enough to be informed) is a very good one if you can stick to it.
And every journey is different. Listen to all the well-meaning advice, but do what's right for you.
posted by RedOrGreen at 12:48 PM on August 27, 2013 [3 favorites]
Yes, I'm sure Welcome to Holland was written with the best of intentions, and the people who pointed me to it did so with the best of intentions, but it gets tiresome.
Plinth's advice is good advice. Ruthless Bunny has good suggestions. headspace's suggestion (only read enough to be informed) is a very good one if you can stick to it.
And every journey is different. Listen to all the well-meaning advice, but do what's right for you.
posted by RedOrGreen at 12:48 PM on August 27, 2013 [3 favorites]
Do try to keep the stress of your situation from shadowing your boy.
posted by Cranberry at 1:12 PM on August 27, 2013 [1 favorite]
posted by Cranberry at 1:12 PM on August 27, 2013 [1 favorite]
I agree with reading only as much as you need to to stay informed. Facebook has been a surprising source of support groups for me (Mommies of Miracles has some CDH moms, I believe), and there are "mommy blogs" with a focus on almost any medical or special needs situation you can think of. It might be helpful for you to read about kids who are a few years past this diagnosis, or it might not - I have found it to be so but I know others who say it makes them feel worse.
I was often advised to take things one day at a time when I was on bedrest, because the future is so uncertain and there is such a thing as being overly aware of the possibilities. This is really good advice, especially when things are murky and unknown, and if I could have taken it, I would have. But I am an eager beaver, and so all of the suggestions below are things that I did when I found out that my daughter was definitely coming months before her due date.
Have in-depth conversations with a neonatologist and perinatologist about the possible outcomes, and make what decisions you can. Start writing things down rather than relying on your memory - there will be lots of big words and acronyms and you'll think of questions while you're in the shower six days before your next visit. Find out about the NICUs in your area, and see if you can arrange to visit one ahead of time. Talk to families who have been through the NICU, whether they have had the same diagnosis or not - just knowing someone has been down that road is immensely helpful (we spent nearly five months - feel free to memail me if you'd like). Most of all, be gentle with yourself and with your husband, and try to forgive people the things they say when they don't know what to say.
posted by peanut_mcgillicuty at 2:06 PM on August 27, 2013 [2 favorites]
I was often advised to take things one day at a time when I was on bedrest, because the future is so uncertain and there is such a thing as being overly aware of the possibilities. This is really good advice, especially when things are murky and unknown, and if I could have taken it, I would have. But I am an eager beaver, and so all of the suggestions below are things that I did when I found out that my daughter was definitely coming months before her due date.
Have in-depth conversations with a neonatologist and perinatologist about the possible outcomes, and make what decisions you can. Start writing things down rather than relying on your memory - there will be lots of big words and acronyms and you'll think of questions while you're in the shower six days before your next visit. Find out about the NICUs in your area, and see if you can arrange to visit one ahead of time. Talk to families who have been through the NICU, whether they have had the same diagnosis or not - just knowing someone has been down that road is immensely helpful (we spent nearly five months - feel free to memail me if you'd like). Most of all, be gentle with yourself and with your husband, and try to forgive people the things they say when they don't know what to say.
posted by peanut_mcgillicuty at 2:06 PM on August 27, 2013 [2 favorites]
I wanted to know as much as possible and found researching and reading intensively was helpful. I know that lots of people prefer to rely on a trusted doctor to handle the information flow, but I was much calmer with much more information. Statistics helped a lot because I felt more prepared by working through what I would do in all the different terrible scenarios by probability.
It might help to ask your partner to take notes or to record meetings with doctors and specialists because sometimes it's so overwhelming that you can't remember the details afterwards.
I did not like having people come over to help me personally because as well-intentioned as they were, it was so exhausting to talk about the pregnancy with them, but it was great to have people help out for my other kids. You may find it easier to redirect help to your partner and child so they have more resources in turn for you.
I liked writing letters to the baby, a sort of pregnancy journal that let me write down how I felt and sort of apologise to the baby and record hopes I had, even if they wouldn't come true.
And while this is your partner's child, this is not his pregnancy. You have lost a peaceful and joyful pregnancy, which is a real and devastating loss regardless of how your baby does. Your husband might not be able to understand the experience the same way other women with difficult pregnancies and losses can, but he can still support you in ways that help beyond talking like through small gestures or written notes or whatever makes you feel comforted.
I also found a lot of help in reading stories of loss and survival from other expectant and new parents.
Also, batten down the hatches and survive. Don't take on anything additional or expect to get more done than getting through the next year. If you need to cut down responsibilities at work, do it. Hire a housekeeper, take up an indulgent hobby you like, etc. Just surviving this year will be the equivalent of writing a novel AND running a marathon AND moving to a new country. To people outside, it'll look like a quiet year, but surviving it - getting through this week, that makes you one of the strongest people around. The strength you need will be to get up and recover when you're broken, so be kind to yourself and your family.
I am so sorry. This is one of the biggest and most terrible experiences of parenting - life - and it is both devastatingly lonely and widely shared.
posted by viggorlijah at 7:36 PM on August 27, 2013 [2 favorites]
It might help to ask your partner to take notes or to record meetings with doctors and specialists because sometimes it's so overwhelming that you can't remember the details afterwards.
I did not like having people come over to help me personally because as well-intentioned as they were, it was so exhausting to talk about the pregnancy with them, but it was great to have people help out for my other kids. You may find it easier to redirect help to your partner and child so they have more resources in turn for you.
I liked writing letters to the baby, a sort of pregnancy journal that let me write down how I felt and sort of apologise to the baby and record hopes I had, even if they wouldn't come true.
And while this is your partner's child, this is not his pregnancy. You have lost a peaceful and joyful pregnancy, which is a real and devastating loss regardless of how your baby does. Your husband might not be able to understand the experience the same way other women with difficult pregnancies and losses can, but he can still support you in ways that help beyond talking like through small gestures or written notes or whatever makes you feel comforted.
I also found a lot of help in reading stories of loss and survival from other expectant and new parents.
Also, batten down the hatches and survive. Don't take on anything additional or expect to get more done than getting through the next year. If you need to cut down responsibilities at work, do it. Hire a housekeeper, take up an indulgent hobby you like, etc. Just surviving this year will be the equivalent of writing a novel AND running a marathon AND moving to a new country. To people outside, it'll look like a quiet year, but surviving it - getting through this week, that makes you one of the strongest people around. The strength you need will be to get up and recover when you're broken, so be kind to yourself and your family.
I am so sorry. This is one of the biggest and most terrible experiences of parenting - life - and it is both devastatingly lonely and widely shared.
posted by viggorlijah at 7:36 PM on August 27, 2013 [2 favorites]
Response by poster: A big thank you to everyone who answered. Thank you for sharing your support and prayers. Right now there is not a lot to do but sit and wait for a more definite diagnosis, so I believe not one prayer or good wish goes wasted.
I will be coming back to the thread and reading everything again, as the first read-through was kind of difficult behind so many tears. I still can't believe we are going through this, sitting down after putting my toddler to sleep and watching Game of Thrones or whatever, and knowing that the following months are going to be hell for us. This sucks.
posted by CrazyLemonade at 7:54 PM on August 27, 2013
I will be coming back to the thread and reading everything again, as the first read-through was kind of difficult behind so many tears. I still can't believe we are going through this, sitting down after putting my toddler to sleep and watching Game of Thrones or whatever, and knowing that the following months are going to be hell for us. This sucks.
posted by CrazyLemonade at 7:54 PM on August 27, 2013
Hi CrazyLemonade. I'm so sorry. I was in a very similar position almost three years ago. My best advice is to just take each day as it comes. A few specific things:
- Your pregnancy will be highly monitored. I had fortnightly scans from 20 weeks, weekly scans from 28 weeks and then daily for the last two weeks. I also had a few hours of foetal heart monitoring each day for the last two weeks. This was annoying and I had to take a lot of time off work and schlep all the way to the hospital and back, but it meant that my daughter's birth defect was well tracked and they knew exactly what they were dealing with when she was born.
- Knowing early (my daughter's condition was also found at the 13 week scan) is great, for monitoring purposes as above but it also gives you time to logistically plan and to emotionally process what's happening. You will need additional time off work for the monitoring through the pregnancy, and then you will want/ need to be at the NICU a lot after the birth. You will need to plan for this, and for your partner and toddler (who may or may not be allowed in the NICU - check the hospital rules).
- I know zero about the health care system in Mexico - will it cost you more to have a high-risk pregnancy and delivery? Will you have to pay for the baby's surgeries and time in the NICU? You need to find out so you can start planning for this, as well.
- You will have a lot less choice in your pregnancy and in the birth than you would otherwise. I couldn't choose which hospital my baby was born (had to be the specialist hospital for neonatal surgery in my area, even though it was further away and more inconvenient to get to) and I felt as though I wasn't in control of a lot of the decision-making around the birth.
- I was incredibly saddened for a while there by the medicalisation of the whole thing. I'd had dreams of a home birth and instead we were in the hospital for almost eight weeks all up and the NICU is a loud and very harsh place. This took quite a lot of processing for me to come to terms with, and coupled with the lack of control I felt was probably the worst part of it, second only to the fear of losing my daughter (but I really tried not to think about that too much, and didn't for the most part).
- After my daughter's birth defect was diagnosed I let myself read about it for one night only, and then again for one night only just before I went in for the delivery. This worked for me - I really didn't want to dwell on the potential negatives but I wanted to have enough information to know what was going on.
- For telling people, I found pragmatism the best option and I found myself being very matter-of-fact about the whole thing when it came up.
- Find out what resources are available to you through the hospital. Talk to the hospital social worker, find out if the midwifery team have a support group for people with high-risk pregnancies, etc etc. I phoned a support line one night when I felt very overwhelmed and found talking to the counsellor very useful.
- I have a lot more to say about the NICU and specifics of caring for a newborn after abdominal surgery, but that's probably enough for now!
My heart really does go out to you and your family. It is a lot to deal with, but medical science is amazing and they can do marvellous, incredible things now. Please feel free to message me if you want someone to talk to.
posted by goo at 11:57 AM on August 28, 2013 [3 favorites]
- Your pregnancy will be highly monitored. I had fortnightly scans from 20 weeks, weekly scans from 28 weeks and then daily for the last two weeks. I also had a few hours of foetal heart monitoring each day for the last two weeks. This was annoying and I had to take a lot of time off work and schlep all the way to the hospital and back, but it meant that my daughter's birth defect was well tracked and they knew exactly what they were dealing with when she was born.
- Knowing early (my daughter's condition was also found at the 13 week scan) is great, for monitoring purposes as above but it also gives you time to logistically plan and to emotionally process what's happening. You will need additional time off work for the monitoring through the pregnancy, and then you will want/ need to be at the NICU a lot after the birth. You will need to plan for this, and for your partner and toddler (who may or may not be allowed in the NICU - check the hospital rules).
- I know zero about the health care system in Mexico - will it cost you more to have a high-risk pregnancy and delivery? Will you have to pay for the baby's surgeries and time in the NICU? You need to find out so you can start planning for this, as well.
- You will have a lot less choice in your pregnancy and in the birth than you would otherwise. I couldn't choose which hospital my baby was born (had to be the specialist hospital for neonatal surgery in my area, even though it was further away and more inconvenient to get to) and I felt as though I wasn't in control of a lot of the decision-making around the birth.
- I was incredibly saddened for a while there by the medicalisation of the whole thing. I'd had dreams of a home birth and instead we were in the hospital for almost eight weeks all up and the NICU is a loud and very harsh place. This took quite a lot of processing for me to come to terms with, and coupled with the lack of control I felt was probably the worst part of it, second only to the fear of losing my daughter (but I really tried not to think about that too much, and didn't for the most part).
- After my daughter's birth defect was diagnosed I let myself read about it for one night only, and then again for one night only just before I went in for the delivery. This worked for me - I really didn't want to dwell on the potential negatives but I wanted to have enough information to know what was going on.
- For telling people, I found pragmatism the best option and I found myself being very matter-of-fact about the whole thing when it came up.
- Find out what resources are available to you through the hospital. Talk to the hospital social worker, find out if the midwifery team have a support group for people with high-risk pregnancies, etc etc. I phoned a support line one night when I felt very overwhelmed and found talking to the counsellor very useful.
- I have a lot more to say about the NICU and specifics of caring for a newborn after abdominal surgery, but that's probably enough for now!
My heart really does go out to you and your family. It is a lot to deal with, but medical science is amazing and they can do marvellous, incredible things now. Please feel free to message me if you want someone to talk to.
posted by goo at 11:57 AM on August 28, 2013 [3 favorites]
My baby's genetic disorder was diagnosed after birth, but I had the same question about telling people and got a lot of good advice here. In the end, I told two friends via e-mail, who told the rest of our local friends (and they all did a phenomenal job helping us with meals). My parents and in-laws told their extended families. I told people at work, since I ended up having to go back part time. My colleague had a baby several months later who was born with Down Syndrome and additional health issues, so it was nice to be able to talk with him. But I haven't told the general friends and acquaintances who knew I was pregnant, and there certainly wasn't any Facebook-style announcement.
About support groups... I randomly found a woman's e-mail address off some Babycenter post, and she turned out to be the best person I could have contacted: smart, compassionate, and quick to respond to my worried e-mails. She told me to hold off on finding the Facebook groups related to our kids' genetic disorder, due to misinformation and general drama. I ended up finding the groups a couple months later and really appreciated the warning. The thing about the groups is that the people who post most frequently are generally the ones having the toughest time of it - either their kids really are the sickest of the sick, or they don't have family support, or they're having a tough time dealing with their kids' school, or they're attention-seeking crazy people, etc. I do get some useful information there from time to time, but I really have to weed out the vast majority of the comments, which is annoying. The parents whose kids are doing well don't post, so you can get a really skewed perspective of the medical condition. After a couple months, my son's doctors got us in touch with another local family whose kids had the same condition - it took a while to get their info because of HIPAA, but they were incredibly helpful.
I tend to see the worst case scenarios first; I'm a worrier. Because there's not much written about my son's rare genetic disorder, I ended up reading the related medical studies, and the general prognosis did not look good. However, I've come to realize that many advances in treatment and early detection are so recent that they haven't yet been reflected in the published scientific literature - many of the older studies are pretty irrelevant at this point. So I would take anything you read with a grain of salt, whether it's written by a parent or a scientist.
I wish you and your family all the best. It's been 8 months since my son was diagnosed, and I'm no longer terrified. Worried, definitely - his condition and daily life require constant vigilance. I'm still more bitter than sad, which is something I hope will ease with time. I had to block all baby photos from my Facebook feed for a while, and it still hurts to hear about blissful births, happy early months with a newborn, and easy decisions to have another child. I feel closer to my son's doctors now than I do some of my friends, and I certainly see them more often than many of my friends; I hope you have a supportive medical team and make it through these next months as a team.
posted by Maarika at 8:21 PM on August 28, 2013 [4 favorites]
About support groups... I randomly found a woman's e-mail address off some Babycenter post, and she turned out to be the best person I could have contacted: smart, compassionate, and quick to respond to my worried e-mails. She told me to hold off on finding the Facebook groups related to our kids' genetic disorder, due to misinformation and general drama. I ended up finding the groups a couple months later and really appreciated the warning. The thing about the groups is that the people who post most frequently are generally the ones having the toughest time of it - either their kids really are the sickest of the sick, or they don't have family support, or they're having a tough time dealing with their kids' school, or they're attention-seeking crazy people, etc. I do get some useful information there from time to time, but I really have to weed out the vast majority of the comments, which is annoying. The parents whose kids are doing well don't post, so you can get a really skewed perspective of the medical condition. After a couple months, my son's doctors got us in touch with another local family whose kids had the same condition - it took a while to get their info because of HIPAA, but they were incredibly helpful.
I tend to see the worst case scenarios first; I'm a worrier. Because there's not much written about my son's rare genetic disorder, I ended up reading the related medical studies, and the general prognosis did not look good. However, I've come to realize that many advances in treatment and early detection are so recent that they haven't yet been reflected in the published scientific literature - many of the older studies are pretty irrelevant at this point. So I would take anything you read with a grain of salt, whether it's written by a parent or a scientist.
I wish you and your family all the best. It's been 8 months since my son was diagnosed, and I'm no longer terrified. Worried, definitely - his condition and daily life require constant vigilance. I'm still more bitter than sad, which is something I hope will ease with time. I had to block all baby photos from my Facebook feed for a while, and it still hurts to hear about blissful births, happy early months with a newborn, and easy decisions to have another child. I feel closer to my son's doctors now than I do some of my friends, and I certainly see them more often than many of my friends; I hope you have a supportive medical team and make it through these next months as a team.
posted by Maarika at 8:21 PM on August 28, 2013 [4 favorites]
Oh man, blocking on facebook! Someone I liked a lot had a baby due the same time with a blissful happy pregnancy and so many photographs. It was brutal. Unbaby is a chrome extension that replaces baby photographs with something else like cat photos. It would have helped so MUCH.
posted by viggorlijah at 8:59 PM on August 28, 2013
posted by viggorlijah at 8:59 PM on August 28, 2013
I saw this last night and thought of you: 17 Ways to Support Friends When Their Baby is Diagnosed with Special Needs. Maybe if you don't have the words to tell them what you need, you can just share this link and say "Number 7 and 9, but please not 4" or whatever.
posted by peanut_mcgillicuty at 1:22 PM on August 30, 2013
posted by peanut_mcgillicuty at 1:22 PM on August 30, 2013
Response by poster: Thanks again. I'm not marking any best answers because I appreciate every comment. I will still be checking back in case there are any more answers later.
posted by CrazyLemonade at 11:10 AM on September 3, 2013
posted by CrazyLemonade at 11:10 AM on September 3, 2013
This thread is closed to new comments.
I've found them through Yahoo Groups. I don't know enough about your specific issue to find the right group for you, but you could poke around in pregnancy groups, special needs groups, and there are a few that have Congenital Diaphragmatic Hernia in their description.
posted by The corpse in the library at 10:47 AM on August 27, 2013 [3 favorites]