Q & A with Lily's mama

Post by Lynn

Lilian Grace Harris was born on January 9, 2010 at 2:29 pm and passed away that same day at 5:29 pm. She had Amniotic Band Syndrome which is usually not fatal, but in her case, the bands formed so early in development (they thought the first trimester) that they interfered with the formation of her vital organs, primarily her brain. We received the diagnosis at 22 weeks and I went into preterm labor at 35 weeks.

1. What was it like for you and your family to learn of your baby's diagnosis?
We were devastated. We had brought our three year old along to see pictures of his sister/brother at the ultrasound where her condition was diagnosed. I had a feeling all along that something wasn't right, but I had the same feeling with my little boy and all was well there, so I ignored it. It was hard because he saw our world shatter that day and was too young to understand it. Every time we drove by the doctors office he was very concerned that we might go in there again and he didn't want to because it made everyone so sad. The main thing I remember was being in a fog for a very long time. It has been over 3 years and that fog still comes back. I have learned that I have to take it one day at a time and sometimes one moment at a time.

2. What did you do during your pregnancy to make the most of your time?
I didn't do enough during my pregnancy, that is a huge regret that I have. The only thing I did was take a few pregnancy photos. At the time I didn't know anyone who had gone through this and continued the pregnancy. I felt totally lost. I tried to reach out to support groups for parents who had lost children but my baby was still alive and we didn't know what was going to happen so I didn't really seem to fit anywhere. I finally sought out a counselor and that was helpful. I also did some journaling.

Things I wish I had done: more photos (especially the traditional ones, but with someone that new my situation and was sensitive), videos, I didn't get my ultrasound pictures until after she was born and had died, I wish I had fought harder for those, but I didn't have the energy.

3. How do you celebrate your baby's life?
This is something I constantly struggle with. For her first birthday, I finished her scrapbook album, and for the past two I have just kept to myself mostly. This year I took my son to the bakery and we bought cupcakes to celebrate. I have seen things done such as balloon releases or butterfly releases, and would like to do something like that.

I remember telling my husband that something good had to come of her life no matter how short or I couldn't survive it. I hear so many families say that helping others is healing. I also know that you have to be ready and in a good place in order to be gentle with yourself and effective at helping others. Recently I have become involved in some local groups and provide support to families who are experiencing loss through miscarriage, stillbirth, or infant loss. It gives me a way to give back and also share my story.

4. What advice do you have for families facing a fatal diagnosis?
You are not alone. Unfortunately we belong to a club that no one ever wants to join, but we have a certain bond. We are there for each other because, even though we may not know exactly what you are going through, we do know the road you are traveling because we have traveled it too. We will support you every step of the way. Don't be afraid to ask for second opinions and know all your options. I was unable to find support groups before Lily was born, but since then I have found organizations/websites/etc that offer support and assistance. I wish I had found them sooner. Seek them out. Plan as much as possible in advance. Set up photography, you can get it done at no charge. Have a birth plan and if possible share it with the physician and nurses ahead of time. Know what services the hospital provides. Bring special clothes/items to the hospital. Take videos of your family with your baby. Read him/her a story, sing them a song. Most importantly, be gentle with yourself. Know that, while your life will never be the same, you will make it.

*Read more of Lily's story HERE.