It has been my experience, and the experience of other mothers I have spoken with, that it is normal to have periodic bouts of depression. Even when your child is doing well you may experience a great sadness. This is especially true if someone you love passes away or if a child you know (especially another “heart” child) passes away. You may even experience “survivor’s guilt” because some other child did not survive while your own child did. You don’t wish for your child to pass away, of course, but you may wonder at the fairness of it all, especially if the child who passes away was at one time or another healthier than your own. There is no rhyme nor reason as to why some children make it and some do not. This defect is not caused because of a neglectful pregnancy, child abuse or drug abuse. No one really knows what causes this heart defect and no one really knows why some children survive and others do not.

I could not write about this topic in the first edition of this book book because Alexander was in between surgeries for most of the writing. I worried constantly whether or not he would survive until the next scheduled surgery. I wondered what I would do if he didn’t make it. I wondered if I could even continue to finish writing the book and then I determined that this would be Alexander’s legacy. I was more determined than ever to finish the book, but not to write this chapter.

We are now over a year and a half post-op Alexander’s last scheduled surgery. Much has happened since I started writing this book. One of the most difficult things for me to go through was the death of two HLHS children who we met when Alexander was first taken to the hospital for his Norwood Procedure. During the course of Alexander’s stay there were four children in the hospital at different stages in the Norwood/Fontan continuum. None of these children were given very good odds of surviving the first surgery yet all of them did. Subsequently two of the children have passed away - one from complications from the Completion Fontan and one from complications with his transplanted heart. These two deaths had a profound effect on me.

I went through the “survivor’s guilt” which I described just a few paragraphs above. I couldn’t believe Alexander had survived when these other two sweet children didn’t make it. I couldn’t believe our children would not grow up to play with each other. I couldn’t imagine how these parents would survive. I wanted to help but I didn’t know how and I ended up going into a state of depression for which I went to the hospital for help. The result of that hospital visit was that I joined a grief support group and got some much-needed help.

It was through talking with a hospital chaplain, that I found out about The Compassionate Friends. This is a national support group for parents, relatives or friends of children who have died. There are local chapters across the United States. Here is the information for the national office:

The Compassionate Friends
P.O. Box 3696
Oak Brook, IL 60522-3696
(312) 990-0010

The Compassionate Friends is a non-profit organization. It is a “self-help organization offering friendship and understanding to bereaved parents. The purposes are to promote and aid parents in the positive resolution of the grief experienced upon the death of their child, and to foster the physical and emotional health of bereaved parents and siblings.” Local chapters have meetings, a list of parents willing to talk to one another over the telephone and a monthly newsletter. I strongly encourage anyone who is grieving over the loss of a child to contact their local Compassionate Friends organization or any other local grief support group. Hospitals, churches, synagogues, or local mental health agencies will be able to help you find the right group for you. They can help you overcome your grief in a positive and healthy manner with support from others who really know what you’re going through.

If you are the friend of someone who has just lost a child:

Some things that you could do that would be helpful are: call or jot notes to your friend frequently - especially after everyone else has stopped doing so; take your friend out - for a manicure or pedicure or to get her hair done if it’s the mother, to play some kind of sport or to work on a special project if it’s the father; talk to your friend about what you remember about the child - sharing memories helps because the parent may be afraid that everyone will forget about him/her; if the parents need help financially set up a fund for them or help them in any way you can; mow their grass or do other chores that they may be unable to do for a while; surprise them with baked goods or a dinner a month or two after people from the church or other friends and family have stopped doing so. The parents will be in shock for a time and will not grieve in exactly the same way. The parents may not be able to comfort each other. This situation is so difficult on a marriage. As a friend, you may be able to help the parent work through the grief but don’t push for the parent to be at any particular stage within a given time frame. Every person is different, grieves in his or her own way and needs healing time.

Make sure that you observe your friend’s religious practices with reverence. For some parents, their religion takes on new importance after their child dies. One mother told me about how a family member read the newspaper during a rosary said for her child. This incident hurt the mother very much and has tainted that relationship.

One of the biggest mistakes caring people sometimes make after someone has passed away is telling the bereaved what to do with the personal belongings of the person who has passed away. Don’t encourage your friend to pack things up or give things away until the parent is ready. The parents may have to leave their child’s room exactly as it was for quite some time. This is normal. There will come a time when the parents know what to do with the things.

If your child has passed away:

The first thing you need to know is it is okay to not be okay. Cry when you must, you shouldn’t be expected to hold your feelings in; you’ve lost your child. At times your grief will seem overwhelming, but it won’t always be that way. You must know and believe that it will get better. Take comfort in your faith, your own instincts, your support systems and your routines of life.

The first year will probably be the hardest because there are all of those “firsts” to have to go through: the first Christmas without your child, first birthday, etc. Be patient with yourself and allow yourself to grieve. You may feel that you are doing better and then when a holiday or special occasion comes along you find yourself going through the grieving cycle all over again. This is normal.

Throughout the year you may wish to have masses or services said for your child, especially on his/her birthday and death date. It is perfectly normal to decorate the grave site throughout the year, even to the point of having small wreaths or decorations on the site. It is healthy to remember your loved one during family prayers. It is also common to think you see or hear your child and to have dreams about your child.