Tag Archives: Anencephaly

Helping a Friend Recover from Loss

A friend of a blogging friend lost a child yesterday. It brought back such a rush of emotion for me that I spent most of the afternoon rocking and nursing Leighton…so grateful that she is here and healthy.  It made me think back to those horrible first months and even the first year after our own baby was lost at 25 weeks and I wanted to blog about what helped me during that time.

When a friend loses a child:

Don’t shy away or wait to contact her--you might think that she needs space, but what she really needs is love.  My friends rallied around me and made all the difference. My girlfriend Zee flew in from New York to spend the week before my surgery with me. I felt like a walking death sentence and my emotions were out of control. Jeremy was a resident and had to work that week so that he could be with me for the procedure and to care for me the week after.  She kept me company and listened while I railed against the fate that had become mine.  My friends sent flowers, made phone calls, came to the house to hug me and hold my hands through it all. I love them so much for that.

Give her a journal or a memory box to keep important items inside. I wrote every day–pasting sympathy cards between pages, drawing pictures, anything to get the chaos in my head out as much as possible. I packed away the few precious things that we had collected for the baby. A tiny stuffed animal, a Dr Seuss book, a onesie from Jeremy’s sister. In my heart all of these items belonged to this baby and would never be used for another.

Our child had a severe birth defect and I did not see it or take pictures. I regret that every day. Encourage your friend to make memories with that baby–take photos, hand prints, locks of hair–anything to hold on to in the future that will keep that baby real and provide a memory for  a time when you need it.

Just Listen–there really isn’t anything that you or anyone else can say to make it better. But having someone to listen when I needed it made a huge difference. Don’t tell her to get over it…Don’t tell her it is time to move on. There will be good days and bad days for the rest of her life. Don’t tell her that someone had it worse or that her pain isn’t valid or real. Silence is ok…or tell her that you are sorry it happened to her and sorry she is hurting. Tell her that you are there.

Remember her child as a person–even if she never held the child or got to be a mom, that baby is real. She probably has a name and definitely dreamed of all of the wonderful things that would be while carrying her baby. I am always touched when friends remember the due date or the day that my baby died. One friend gave me a rose on my due date and told me “I just wanted to let you know that I remembered.” I keep it in my memory box. It is the only birthday present that my child received.

Encourage her to seek help from mothers who have been there–only someone who has experienced this loss can really relate. That doesn’t mean that you cannot empathize or sympathize, but finding another woman who has experienced the loss of a child lets you know that you are not alone in this. It also gives you a resource that will allow you to see that there will be a time when things are a bit easier.

I joined an online support group for mothers who had lost babies to anencephaly. I looked at pictures of the children daily in the beginning to overcome my fear of my own child. I took comfort in knowing that I was not the only one experiencing this nightmare. I also found reassurance in the women who chose to try again immediately, even though I could not bear the thought.

I hope that this helps someone.



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So this is what the secrecy has been about over the past few months. The test was taken at the beginning of October and I am now almost 4 months pregnant. 

We have been keeping things super quiet for the most part because our past loss due to anencephaly and hoping to reveal the happy news when we were sure everything would be ok. So far…things are ok and things are still a bit shaky. We had our big ultrasound on December 23rd and were able to see the baby’s head and skull are formed! We were also very happy to hear that the spine doesn’t appear to show any signs of spina bifida.

However, I have had some genetic testing done since finding out about the pregnancy and I have tested positive for a genetic defect that affects the way that I metabolize  folate.  The condition, affectionately known as MTHFR  or Mo#$%r Fu@#$r! stands for 5, 10 methylenetetrahydrofolate reductase which impairs my ability to metabolize folic acid, a key component in preventing neural tube defects and also presents problems with blood clotting.  I have been on daily lovenox injections (a blood thinner) for several weeks now and we hope that this will decrease the likelihood of a stroke,  miscarriage or loss later down the road. In addition, I take 4mg of folic acid daily, a B6, and a multi vitamin.

I decided to go public with the news after reading a few other blogs related to pregnancy and MTHFR as well as some sites written by other moms who have experienced the loss of an infant with anencephaly.  Their stories helped me to see that I wasn’t alone and gave me hope…so you will see lots of tags in this post linking to information that I hope will be helpful if another mom who needs it finds me.

We have an amniocentesis scheduled for next Tuesday, to rule out other genetic defects. Please keep us in your thoughts.


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