Showing posts with label multiples. Show all posts
Showing posts with label multiples. Show all posts

Wednesday, June 18, 2008

"Empty Cradle, Broken Heart"

"Surviving the Death of Your Baby" by Deborah L. Davis, Ph.D

I appreciated the recommendation of this book after our loss. It allowed me to get in touch with my feelings of grief on a deeper level. I read passages of the book to Magic, and he too got in touch with feelings of grief he did not realize he had. When he did, I did not feel so alone in my daily sadness. This book offers a sensitive approach to families dealing with grief related to miscarriage, stillbirth, pregnancy interruption, selective reduction, and neonatal loss.

While I think the whole book is good, there were certain chapters that spoke to me the most. I'll include some excepts from the book here.

Painful Feelings

"Grief encompasses many painful feelings and some are especially difficult to express, cope with and work through. Feelings of failure, anger, guilt and vulnerability to tragedy are common among parents whose baby has died.

Three of these feelings - anger, guilt, and failure - arise from the belief that you are in charge of your destiny. Until a tragedy strikes, you may have thought you had control over what happens to you.

This sense of control is the source of many of your painful feelings. You may be angry that your baby died in spite of happier plans; you may feel guilty you could not prevent it; you may feel there must be something wrong with you that such a terrible thing could happen. If you interrupted the pregnancy or refused medical heroics, you may feel an additional sense of responsibility that can heighten these feelings. You may agonize over the questions "Why me? Why my baby?" You want answers to ensure more control in the future.

Another approach is to realize that you don't always have the power to prevent bad things from happening to you and that misfortune can strike even when you least expect it. This vulnerability to tragedy can be a terrifying feeling to face.

To avoid the fear and helplessness that come with vulnerability, you may want to hold on to anger, guilt or failure for a while. These emotions protect that comfortable illusion of being in total control. Later, as you begin adjusting to your baby's death, you will come to the painful realization that you don't have control over everything that happens in your life."

Making Peace with Agonizing Decisions

"If you faced life-and-death decisions for your baby, resolution of your grief may seem incredibly difficult.

Decisions Parents Face
Perhaps you enlisted the aid of reproductive technology. You greeted the news of conception with joy, only to be faced with decisions regarding the risky business of a pregnancy with multiple babies. If more than two or three embryos were implanted, you may have to consider selective reduction in order to improve the chances of any of your babies surviving. You may have taken a leap of faith and tried to carry all the babies, but none of them made it. Or perhaps you chose reduction, but all the babies died. Either way, or if there are severely disabled survivors, you may feel punished for your decision.

In our culture, there is considerable social pressure to reach for miracles and employ the most technology possible to save a life. Carrying multiple babies to near term is considered a brave undertaking where surely, healthy babies are the reward. Parents who take on the care of a severely disabled child are looked upon as "courageous". Extensive and invasive medical treatments for critically ill newborns are referred to as "heroic measures". In contrast, selective reduction, pregnancy interruption and refusal of aggressive medical intervention are generally not considered "heroic". As a result, parents who choose these options often feel judged, isolated and unsupported. The purpose of this chapter is to point out the heroism in questioning medical technology, the virtue of rejecting the goal to save every life, the sensitivity in recognizing the complexities of a situation and the wisdom in choosing to let go. Indeed, it takes a lot of courage to meet death head on.

Living with the Decision: The Doubts
While some parents may have felt that there was only one way to go, others feel torn. With all the options being terrible, you may have felt it was an impossible decision to make. Even after all is said and done, you may still harbor some doubts.

Since you feel so badly, you may wonder, would the other choice have been better? But really, you feel badly not because you made a bad decision, but because you had to make a tough, painful decision. Moreover, none of the options offered total solutions. Each one held its own risks and created its own problems. Most likely, you would feel equally bad or worse if you had chosen the alternative.

You may wonder later, "If I had more time, would I have made a different choice?" But even with all the time in the world, you probably would have made the same choice. You made the best decision you possibly could - under terrible stress - weighing all the information at hand and balancing many factors, including the welfare of your baby, your marriage, yourself, your other children and even your future children.

If you were pregnant with multiple babies...you may be haunted by media images of families with multiples, and think to yourself, "I could have done that". To be in this position is terribly difficult...You did the very best you could with what you had. And remember that television and magazines tend to idealize multiples, and belittle the risks, hardships and craziness of the pregnancy, NICU and parenting.

The Guilt
Guilty feeling are very common in parents who employ selective reduction, interrupt a pregnancy, refuse aggressive medical intervention or disconnect artificial life-support systems.

If you employed selective reduction you may feel particularly angry at yourself for not trying to carry all the babies. Or perhaps you refused selective reduction and you're angry that you didn't consider the risks of multiple gestation seriously enough. Try to remember that whatever your decision, you were trying to guess what route would lead to the best outcome, without any definite signs to show you the way. In making your decision, you did reach for a greater good. Also remember, your decision came from how much you loved and wanted those babies, not the opposite.

It may also help to remember that guilt is a nearly universal feeling among bereaved parents. It is normal to feel guilty: this does NOT mean you did anything wrong. Instead of being angry at yourself for the decisions you made, be angry that you were put in the position to make a choice between "terrible" and "horrible".

Support Networks: Coping with Harsh Judgment

When you make the decision to let go and say goodbye to a much-loved baby, you may worry that some friends and family will judge you harshly. Even if you try to keep it a secret, most social and family circles exchange information freely. As a result, it may be impossible to completely avoid judgment and harsh remarks. So how do you face everyone? Eventually, as your grief softens and you come to accept that the decision you made was best, it will be easier to be around others and talk openly about your experiences. In the meantime, however, you needn't withdraw until you resolve you doubts. You only need to learn to survive others' comments. To do this, try the following suggestions.
  • Gather insight into what drives those who judge you harshly. Many judgmental people are limited by simplistic thinking or their own emotional issues. They may cling to a black-and-white view: Life is good and death is bad. There are others whose capacity to reason shuts down when they hear the word "baby".
  • Learn to shrug off harsh remarks. Especially in the thick of your grief and doubts, it is normal to be upset by unkind remarks. You can reassure yourself by saying, " it doesn't matter what they think. It wasn't their body, their baby, their family, their decision."
  • Face your feelings. While shrugging off harsh remarks is a valuable skill, the other side of the coin is to examine the feelings that are brought up.
  • Remember, you don't owe anyone a list of justifications. Even if some people don't accept your decision, they can refrain from being hurtful to your."
Obviously, these are complex and difficult issues that the book discusses, but these situations are realities. Often, the consequences of fertility treatments are not widely discussed because they are so charged. If you feel like you resonated with the contents of the book I shared here, but don't feel comfortable leaving a comment, you can e-mail me. My e-mail address is in my profile (click on my name on the right sidebar to get there).

Sunday, May 25, 2008

IVF is Not for Sissies

If I were going to get pregnant with my husband, I had no other choice but to do IVF. I knew this before I married Magic, but I was very naive about IVF. I thought, oh yeah, we'll just do IVF to get pregnant. No one "just" does IVF. Once the reality of IVF got closer, I learned I would have to do things to my body that I did not want to do and was against my personal philosophy. I began to wonder if I had made a mistake in marrying Magic. The instinctual drive to want to have babies can make you think and do desperate things.

Initially, I was terrified of all the shots. First, there is the uncertainty of what the hormones will do to you. You have heard they make you "crazy", but you don't know exactly what that means. You wonder what long-term effects they will have on you. And the idea of sticking sharp objects into your stomach brings up images of "hari kari".

I remember a friend of mine casually saying, "oh, the shots aren't the hard part". I didn't understand at the time how she could be so cavalier. At my first injection training, I looked at the size needle I had to stab in my abdomen and nearly had a coronary. The nurse offered to do my first shot for me, and I kinda felt like a sissy 'cuz it wasn't so bad. I had a hard time with the shots emotionally my first IVF cycle because it felt like I was hurting myself. My second IVF cycle, I had a different attitude that doing these shots meant success, and then they were much easier. Plus, I had learned that the emotional fallout of a cycle not working was much more painful than the shots. Although they are not fun (unless you are a masochist), the shots truly are not the hard part of IVF.

One of the worst parts of IVF is all the difficult decisions you have to make. No one trains you to make these life and death decisions. You have to make fun decisions about which procedures you will have done, if you will do genetic testing or not, and how many embryos to put back. I think the last decision is the hardest. Then, there is the decision of what to do with the embryos if you have any left over.

Most average Joe or Joanne would never think about going to Las Vegas, plunking down $20K of their life savings or borrowed money, and gambling it all away on one game of craps. But that is essentially what you are doing when you embark on IVF. It's a crap shoot, and you never know what you are going to end up with or what is going to happen. There are no guarantees.

You try to play the statistics game. "Oh, I'll put back more embryos than what I want because it's a small percentage of having multiples". Or, "I'll deal with multiples if that is what happens, but I seriously doubt it will happen to me". The fear of not getting pregnant is usually greater than the fear of having multiples because the statistics are more weighted towards not getting pregnant. The thing is about statistics is that when it happens to you, it's 100%.

If you do end up getting pregnant with two, three, or four, then there are a lot of other agonizing decisions you have to make. Selective reduction is an option, but once you become attached to those little embryos, the decision to reduce one of them is agonizing, even if it's the best thing for you and your family. The other option is to go through with the pregnancy and risk endangering your health or your babies health. With IVF, you can have too much of a good thing.

For me, I had to make peace with the fact that I was going to have to endure a lot of medical procedures to do IVF. I first had to have surgery, which was it's own ordeal in and of itself. Should I have surgery? Which type of surgery should I do? What are the risks of each type of surgery? Who should I choose as my surgeon? These were all the questions I had to grapple with, besides the fear that I did not want to have surgery in the first place! As many doctors as I saw were as many opinions that I got, muddying the waters even more. The longer I took to make my decision meant my fertility was slipping away with every day I put it off.

The hardest part of IVF is the emotional part. Women don't blog to discuss just their medical procedures. They do it for the emotional support. The support of gathering additional information to help them make an informed choice, the support of helping them through one of the most stressful times of their life, the support of knowing they are not alone, the support of dealing with failures, and the support of dealing with success. The difficult emotions don't end when you get pregnant. For women that deal with infertility, we forget that pregnancy, birth, and raising a child all have their own emotional challenges. I think we get so focused on the getting pregnant part, which - by the way - should be the easy part, that we forget about how we are going to have to deal with the rest of having a baby! But I digress...

I wanted to say that I now have complete respect for those women who choose NOT to do IVF. I thought I was being a sissy for not wanting to do IVF, but after having gone through it twice, I wonder if it was such a good idea. It's a brave choice to say, "no thank you, IVF is not for me". Modern medicine can bring us miracles, but it can also bring us nightmares.

That is why I like the post from Melissa's blog "One Smart Mama" titled "Regifting Words". It's about what to say when you decide not to do IVF to have children, and people try to be "helpful" by telling you that you can "just do" IVF or some other such medical procedure. She also briefly touches on the related "just adopt" line, but that's a whole 'nother topic for another post.