Best way to deal with the loss of a child from elective termination?

September 11, 2006 4:29 AM

What is the best way to deal with the loss of a child from elective termination?

My wife and I made the very difficult decision last week to terminate her pregnancy at 16 weeks because the test results from a Chorionic Villus Sampling test came back positive for cystic fibrosis. We only found out we were both carriers of the defective gene after we conceived naturally. We learned the hard way that every time we get pregnant our child will have a 25% chance of having both genes passed and grow up with a very difficult life (life expectancy for people with cystic fibrosis is around 30 but often much lower).

We are dealing with this decision fairly well but are seeking more ways we can have some closure on the whole thing. We opted to not have any kind of ceremony or receive the cremated remains of the aborted fetus.

My wife is creating a memory album and wants a little wooden box we can put all of our aborted child's things in: sonogram scans, pregnancy belly photos and a few other things. I think this is a great idea.

I've been pretty strong over the past few days but noticed today that I have slipped into some depression. I know this is one of the stages of grieving, so am not worried. But I see myself also burying myself into my work and don't want to do that until both my wife and I have gotten past this.

We discussed seeing a grief counselor but now think we don't really need it. We're being very proactive about researching IVF and genetic screening of the resulting embryos to prevent raising a child with cystic fibrosis only to watch them suffer and eventually die.

My question is: What kinds of things can we do to get more closure on our sudden and tragic loss?

I would also be interested in any personal recommendations for fertility clincs and doctors on the east coast (NYC area) who specialize in pre-implantation genetic diagnosis (PGD). (Please pass through mathowie or Jessamyn who both know me.)

Lastly, how in the world am I going to find the $20,000 it's going to cost for one round of in vitro fertilization and genetic lab work? New York (our state of residence) is one of the states that does not require insurance companies to pay for part of IVF costs, and we'd likely get rejected anyway because we are a fertile couple who wants to use IVF to have only healthy children.

Related Note: The NY Times had a great article on this last week.

This is posted anonymously because I do not feel like being judged and criticized by religious zealots who want to take away our right to choose abortion. No, not in this time of personal and tragic loss. Take your fight somewhere else, please.

posted by anonymous to health & fitness (23 comments total)

I'm very sorry for the loss of your baby and the dreams you had for him/her and yourselves as parents to this little one.

I can't help with the infertility clinic or payment questions, and can't really help with the closure and grieving process either. I have lost babies and suffered for many years with fertility but grief is so personal and experienced/expressed so differently by everyone. I believe that by posting here and sharing your story you've already started another way of coping with your loss and I suggest that you continue to share with those you trust.

Possibly you can take something you love/like to do (your work, writing, singing, other hobbies) and find a way to use that to grieve. Everyone says it takes time, and that's true to some extent because time does blunt the hurt and make it bearable.
posted by LadyBonita at 5:21 AM on September 11, 2006

I aborted an anencephalic child midway through a pregnancy, so I know what you're going through, and you have my utmost sympathy. I think it might help if you remind yourself that you *are* parents, down to the definition- you're suffering so your child doesn't have to. That doesn't make the pain go away, but perhaps it will make it more bearable.

On a practical note, I know you said you planned to skip the grief counselors, but if you or your wife decide that a support group might help, please be careful and research the group before showing up. Like the anti-abortion groups masquerading as health care at "crisis pregnancy centers", many groups purporting to offer post-abortion support are there to make you see the "error" of your ways.

Good luck to you and your family; I'll keep you in my thoughts.
posted by headspace at 5:26 AM on September 11, 2006

Of course I meant to write, I suffered for many years with infertility.

Headspace, I really like what you wrote about anon & his wife being the definition of parents.
posted by LadyBonita at 5:33 AM on September 11, 2006

First, your grief is entirely natural, nothing to be ashamed of, and deserving of counseling... even if you think you may not need it. There is a wide gulf between a convenience abortion and one motivated by mercy or perceived necessity; the difference between the death of a fetus and the death of a child.

On the proactive side, I hesitate to suggest the following, but...

Adoption?

Some people simply can't fathom forming an attachment to a child not their own; I'm ashamed to say that I am probably one of those people. But if you have the capacity to nurture across perceived genetic boundaries, there is no greater gift you could give to a child whose life would otherwise be very difficult.

As far as the $20,000 goes, your chances of saving that much money are directly linked to your capacity for sacrifice in other areas of your life. If you are still determined to have a natural child after you have dealt with the death of this one, make a budget and begin cutting costs. $20,000 only seems impossible because you haven't started saving yet.
posted by The Confessor at 5:43 AM on September 11, 2006

What a heartbreak. This is the flipside of genetic testing, isn't it? More tough decisions. I don't think I have much to add except that in other circumstances (family member with terminal cancer) a local nonprofit provides "buddies" in addition to support groups-- people who have been through a similar experience for you to use as sounding boards. Some people find the group dynamic very unhelpful, and this is a good alternative. If you do find that doctor who specializes in PGC they may be able to help.
posted by miss tea at 5:59 AM on September 11, 2006 [1 favorite]

I've been thinking about this since I got in and I think that you really need to how to best express your grief. It's not like you can just up and say, "I'm going to grieve now" especially when you never got a chance to meet/know the child.

I have a child with a disability and it had taken us years to grieve that, but it passes. And this too will fade in time, and while it fades you will both become a little stronger from it too.

We're also on pins and needles waiting for a CVS.
posted by plinth at 6:01 AM on September 11, 2006

I can understand what you are going through. My ex-brother in law and his wife had a son who had CF, in between the births of my own sons (14 months apart). My ex-mother in law told me about my brother in law's son, the night my second son was born, although the family had known about it for some months, but didn't want to worry my already pregnant ex-wife. It turned out neither of my sons had CF, and the 3 boys grew up more or less together, going to the same Catholic neighborhood grade school, until my brother in law's son died, at the age of 14.

They grew up together, and yet they didn't. There was a foreshadowing of each day of my ex-brother in law's son's life, brought on by the knowledge that CF victims lead short lives, and are subject to major complications and death from every little sniffle. There were the daily percussive treatments, and the steam and breathing treatments, and there was the constant unspoken comparison to healthy kids and their parents (us) in the same family, when a person's mere presence as a part of that family, but with a different genetic heritage, marks him as undeservingly fortunate. And there was the survivor's grief at the early funereal of a doomed child. And mixed with all that, and continuing to this day, is the bittersweet memory of a kid who was devil-may-care for all his problems, and who lived each day of his life with an impish grin, a taste for practical jokes, and a huge appetite for life.

So, I feel your pain, if in a different way. And I urge you to stop thinking so much about the future for a while, although at times it seems the only respite, and get through these days of grief together with your wife, as you put away some hopes replaced unexpectedly with tragedy. You've been dealt a lousy hand by life, and you need to see where this takes you as individuals and as a couple, without loading up the future unduly.

In some tomorrow, before you decide anything else about any future course, you and your wife may want to seek some broader genetic counseling, and maybe talk with some bioethicists. Options exist today that simply didn't 30 years ago, when my kids were born, but we also understand that CF is only one genetic disease among many that would cause prospective parents with genetic foreknowledge to consider their alternatives, and that being a carrier of CF does not, sadly, prevent you being a carrier of other genetic disease too. But on the positive side, you live in a time when you can choose, technically, and in which you may have still more options from technology, in your reproductive lifetime.

So, get through the coming days. When and if it is time, seek broadly for wisdom and strength. The means will come, if the ends justify them.

I am sorry for your loss, and for the pain it brings you.
posted by paulsc at 6:08 AM on September 11, 2006

I am so deeply sorry for you and your wife's loss. The only thing I can offer is the website ivf connections that is a wonderful resource for every aspect of infertility as well as pregnancy loss. I know you'll find information as well as support there for this time in your life. Be sure to take as much time as you need to heal from this loss.
posted by hollygoheavy at 6:29 AM on September 11, 2006

Genuine "closure" is something you acknowledge, not something you can make happen. Continue to pay attention to each other and take care of each other as you are doing, and let yourselves recover at your natural pace.

Also, it's completely possible to feel as if you don't need counseling and still go get it anyway. That way if it turns out that you do, you already have a relationship established with a counselor that you trust. Counseling isn't necessarily about what you know you need now, but what you may need (or realize you need) later.

Best of luck to you both.
posted by hermitosis at 6:37 AM on September 11, 2006

As with any loss you must experience a period of greiving. The loss will always be with you, but the pain will fade with time. Focus on each other and draw strength from family and friends. May peace be with you.
posted by caddis at 7:14 AM on September 11, 2006

I am so sorry about your loss.

It may be too soon to dismiss the grief counselor out of hand. The process of grieving the loss of a loved and wanted child is long. You can probably anticipate difficulty around the due date of your child, and around the anniversary of the loss. Your wife may have extra difficulties around the time of her period. Conception will be fraught. Baby showers and pregnancy announcements by others will be difficult. Like the previous posters have said, you can't force these milestones. You have to wait and live them.

I have not suffered an elective termination, but I did have a miscarriage. I bottomed out around 6 weeks after. I would think that you and your wife are still in a kind of numb shock - it will take time to assimilate this loss. I found reading stories written by women about their lost children to be very helpful in the grieving process. You may want to look at the miscarriage books. I have the book with the hokey title "Miscarriage: Women Sharing from the Heart". Take a thumb through some of these books and see if they are applicable to your situation. They can help with the issues around the loss of innocence and the loss of the dream of a child, but they can't help with the issues around elective termination. Good luck.
posted by crazycanuck at 8:07 AM on September 11, 2006 [1 favorite]

I have no experience with terminating a pregnancy or with miscarriage, but I can say from experience with grief that what you're feeling one week after the event is not necessarily indicative of how you'll feel next week, or in a month. It's more than possible that you're in some sort of shock, and that after things have calmed down a bit, you'll be hit with another wave of grief now that your minds and hearts have the space to process things a bit more. It's OK and normal to seemingly "go backwards" with grief; don't take that as a sign that you're not coping well.

It is, of course, also possible that you won't spiral back into a new wave of grief in a few weeks or months, and that's OK too. Regardless, it's likely that the timeline of your grief and of your wife's grief will be a bit out of synch, and it's helpful if you can work so that you're not comparing or competing with your healing -- you shouldn't feel that you're either healthier or more disturbed because you're not grieving in the same way she is, and vice versa.

All this to say... I agree with others who say not to cut off forever the idea of a grief counselor, or other support, just because you're doing OK one week later, and don't be afraid to get help or additional support later just because you didn't get it immediately. I know that when I was grieving I spent a lot of energy wondering why I felt so bad months after the even when I was doing so well right afterward, and beating myself up for backsliding. (Which, like I said, is normal, but no one had told me it was normal at that point.) Had I not seen a counselor at that point, I don't think I would have dealt with my grief as well as I think I did.

(And I'm so sorry for your loss, and wish you and your wife the best for the future.)
posted by occhiblu at 10:42 AM on September 11, 2006

Crazycanuck makes some really good points. There are all sorts of dates and events that can be real hard. Along with the ones she mentioned, Holidays were real hard for us, and there can be lots of moments where the grief can just sneak up on you. I would also suggest keeping yourself open to counseling. As time goes on, you and your wife might experience the stages at different rates, and this can be hard on a relationship. Also, if you do go that route, its ok if the first one you go to isn't right for you. There are a lot of different counselors out there with different styles, and some will work better for you than others (we got several referrals from people, and didn't like the first one at all).

In terms of things that you can do, I think that keeping a journal for a while helped me. I agree that your wife's ideas are very good. If you belong to some sort of faith community, perhaps you could have some sort of private ceremony with just the two of you, close family and your spiritual leader. When those dates that crazycanuck mentioned start to come up, it might help to do something together to remember.
posted by eckeric at 11:23 AM on September 11, 2006

Nothing about this decision can have been easy for you. I'd like to suggest that you give your grief and your emotions surrounding the situation as much time and space as they require, rather than trying to figure out an appropriate timeline.

You should also expect your emotional stress to manifest in ways that may look orthogonal to the original issue: pay especially close attention to your relationship to each other and your handling of things in your life that have nothing to do with this situation.

Sometimes the best thing to do with emotions is just have them, with little or no introspection or analysis. If you need counseling, you sound like you're self-aware enough to recognize it.

Good luck. I'm sorry for your loss.
posted by scrump at 2:35 PM on September 11, 2006

I'm so sorry for your loss. Having suffered multiple miscarriages before the healthy delivery of my son, I understand how devastating the loss of a dream can be.

I know that grief counseling may seem over the top, or new-agey or what have you, but I suggest that it's not a terrible idea. Support groups are well and fine for many people, but I'm fairly private and mostly hate people, so for me, sitting in a group listening to people whine wasn't going to work...whereas paying someone to listen to *me* whine seemed plausible.

Depression after an event like this isn't abnormal...just the opposite. It's completely normal. As are dealing with the innate feelings of guilt, of feeling as though the entire world is resting on your shoulders, of feeling as though you've failed. None of that is true, but all of it is valid, and must be managed.

I recommend at least visiting a counselor. It couldn't hurt, it's fairly inexpensive, and it gives you a "safe place" to vent.

Best of luck and big hugs to you and your wife.
posted by dejah420 at 4:12 PM on September 11, 2006

I always thought that the traditional Japanese Buddhist way of dealing with this kind of situation was very comforting for the parents. Stillborn, miscarried, or aborted fetuses are called 'water babies' and have a special bodhisattva (Jizo) as their 'protector' and special ceremonies and remembrances dedicated to the lost child. You said that you didn't have any ceremonies or any sort of burial, but maybe something ritualistic in dedication to your lost child might help with your feelings and as a marker for the closure you seek.
posted by SenshiNeko at 4:36 PM on September 11, 2006

I'd like to add my voice to the Adoption option. I'd like to think that adoption would allow some sort of Karma-like balance in your life that spending $20,000 and a lot of hospital visits won't supply. There are many children in need of a family and parents, and the pure good-will required to take another's child into your family as your own may help aleve any doubts you have in your decision.

I'm sorry for your loss, and I hope that you are able to find the closure you seek!
posted by hatsix at 5:03 PM on September 11, 2006

I also hope you rethink the adoption option. My two (adopted) daughters are the loves and lights of my life. How the universe got us together I'll never understand, but I'm grateful for their presence in my life every single day. (And I write this as a mother to two teenagers!) Remain open.
posted by trii at 5:41 PM on September 11, 2006

I'd like to add one thing: This was not your fault. It wasn't your wife's fault. Neither of you planned this whole chain of events.

Sorry to hear about your loss. :(
posted by drstein at 7:56 PM on September 11, 2006

You and your wife made the right decision. The grief will subside - but maybe manifest itself in different ways down the road. Grief counseling is a great option. Good luck in the future!
posted by wfrgms at 8:29 PM on September 11, 2006

My condolences.

I encourage you to think about adoption. I've never adopted, or even had to blend a family, but I cannot imagine having any difficulty accepting an adopted child as my own. It might be a good option for you.

And do reconsider the grief counseling.
posted by lhauser at 9:33 PM on September 12, 2006

Find others who are in the same or sililar situations and grieve with them. Tell your story to people who can and will listen.

You will never 'get over it', and really, you shouldn't. What kind of person would you become if you 'got over it'?

Embrace the sadness. Sorry for your loss.
posted by Monkey0nCrack at 3:16 PM on September 14, 2006

Would it help to know that having the CF gene, which they passed on to you, helped your ancestors survive and prosper (and reproduce)?

Having a single copy of the CF gene apparently confers resistance to TB.
posted by jamjam at 7:41 PM on September 14, 2006