Susan
Mom to Matthew Kristopher
Stillborn on July 27th, 2002 at 38 weeks
East Northport, New York
Life is not without loss. Everyone experiences it in some form during their life. How do you move on from your darkest days, when time stands still but life goes on around you? How do you pick up the shattered pieces and move forward, to rebuild your life, rise above the pain, and perhaps come out stronger and more determined than before? How do you go on to do something positive and help others in a similar situation, while helping yourself to heal? There will be light at the end of your long dark tunnel. You will get there eventually, maybe without even realizing it, and maybe by constantly working your way out, one little step at a time. This is my story of loss, grief, healing, and passion found.


2001 was an emotionally difficult year for me, with the sudden death of my beloved grandfather, September 11th (9/11), buying and moving into a new house, and the unexpected pregnancy of my son Matthew.

In the spring of 2002 we proceeded with major renovations to our new house, this took up most of our time that year. On June 3rd I went to the hospital for contractions at 30 weeks. Over the next 6 weeks I went to the hospital 2 more times and was on modified bed rest and medication to slow the contractions, although they never really stopped. I was wishing time away because each week in utero was important to Matthew’s development. Our fear was that he would be born early and be in the neonatal ICU for a little while.

The last trimester of pregnancy was very uncomfortable with the unseasonably high summer heat and daily unrelenting contractions and cramping. But Matthew’s heart rate and non stress test results were good, the doctors assured me I was fine. We were all excited and counting the days until his arrival.

On July 26th I had terrible cramps and a backache that day but didn’t go to the hospital because I knew it wasn’t true contractions and I would be sent home again, just like before. On Saturday, July 27th, I woke up to a lot of pelvic pressure and wasn’t feeling Matthew move. I thought that maybe the cramping had dilated me. I decided to go to the hospital right away. As I was getting ready, I started to hemorrhage. We quickly rushed to the hospital, some 45 minutes away (I hadn’t changed doctors after we moved). All the while I was in pain and I felt blood gushing out every time I moved. The nurses took me in right away. They couldn’t find a heartbeat with the doppler. They rolled in a sonogram machine. We saw the picture of our baby with no heartbeat and just laying still. That picture is permanently embedded in my memory. I had a realization that this was a possibility from the amount of blood I lost, but my husband was in utter shock.

I had a complete placental abruption and that’s why I was bleeding so much. A large clot was running between the wall of the uterus and placenta, causing it to detach prematurely. Matthew had to be delivered immediately to stop my bleeding. A cesarean section wasn’t an option because my platelet count was so low, I would have just kept bleeding more. The doctors gave me pain killers and 6 units of blood transfused. I kept passing in and out of consciousness during the labor. But I remember the delivery clearly. As soon as Matthew was delivered, he was whisked away and I didn’t get to see him until much later. The doctors had to work on my uterus to stop the bleeding and it was very painful. The massive blood loss caused my kidneys to shut down and I went into DIC, which is very dangerous. I had numerous IVs in both my arms, including an arterial line for frequent blood draws. They even left the epidural line in my back for 2 days because of fear of bleeding into the spinal column. The amount of bruising on my arms was scary to see, I looked and felt like a battered woman. Thank God that with quick acting doctors and generous blood donors (it really IS the gift of life!), I was able to pull through, but without my baby. So many doctors and nurses told me how lucky I was to be alive. 

We held Matthew for a short time that evening and our family that came to the hospital got to see him as well, he was beautiful and absolutely perfect at 7 lb 2 oz.
The physical recovery was not easy as my body had to adjust to the blood change from the transfusions, and I had trouble regulating my body temperature. A few days later I came down with a severe uterine infection, which was the worst pain I’d ever felt, even moving and breathing was like stabbing pain. So as I lay in my bed physically beaten and emotionally broken, I knew I was depressed. I didn’t care about anything, and my mind was numb, I felt tortured and couldn’t go on. That was the lowest point in my life. I struggled to find meaning. Instead of asking “why me?” I asked “what was the point of it all?”. The tragic cascade of events just didn’t make sense. Our lives looked no different from the outside, we didn’t bring a new baby home, but inside we were shattered and didn’t know how to pick up the pieces.

Once my strength regained and the physical pains eased, I was able to work on the emotional wounds. Fortunately my husband and I were able to start the perinatal bereavement support group at the hospital three weeks after Matthew’s passing. The support groups helped for the camaraderie and doing research helped me to find much needed answers about what had happened. It turns out that I have a genetic blood clotting disorder called Factor V Leiden (homozygous), which caused the placenta to clot and prematurely detach. My older sister also had a full term stillbirth 10 years earlier, and now we knew, from the same condition. 

Eight years later, I still suffer from the effects of the abruption. I developed fibromyalgia which will flare up at times with frequent headaches, muscle aches in my arms and legs, and depression. It’s a signal that I need to take better care of myself and to not get overwhelmed by doing too much.

Five months after Matthew passed away, the day after Christmas, my husband had major open heart surgery to replace his defective aortic valve. His congenital heart condition was discovered three years earlier, but became devastatingly worse after Matthew’s death and the doctors urged him to have the surgery immediately. The grief and stress had taken its toll on him, he literally had a broken heart. As a family we learned to stay strong for each other, yet support each other on our bad days. My husband is now fully recovered, and even brushes off the heart surgery as nothing compared to losing his son.

I have done numerous things to aid in my healing journey. I joined local and online support groups, read books on infant loss, made a memorial website for my son, planted a beautiful garden in our yard dedicated to Matthew, got a tattoo that I designed of a heart with baby feet inside, with wings and a halo. I’ve spoken at support groups and counseled to newly bereaved parents. I traveled to Washington DC for the First Candle Stillbirth Symposium, and to Albany, NY to raise awareness and support of a Certificate of Birth Resulting in Stillbirth Bill in New York {It still hasn’t passed. Please visit www.cbrsbill.blogspot.com to get involved}. Most recently I volunteered for the Ministry of Consolation at my church. I hope to be a Companion to those that have lost babies and young children, and to walk with them through the planning of the Funeral Mass and as a peer support afterwards.

By far, the largest and most wide reaching component of my healing journey has been my business, www.MyForeverChild.com Since starting it six years ago, I have been able to personally touch and bring a bit of comfort to thousands of people that are mourning the death of their child(ren). I am able to give of myself and donate to charities on a much greater scale than I am able to do on my own. It is in helping and blessing others that I’ve found the greatest healing along my own journey. It makes me feel that the little boy I gave birth to made a lasting impact on the world he wasn’t able to live in.

Susan blogs at http://www.myforeverchild.blogspot.com
You can visit her Facebook page at http://www.facebook.com/myforeverchild
and her website at http://www.myforeverchild.com
You can view her Story of Hope here.
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Comments

  1. Trena says:

    ((hugs)) This made me cry. I am so sorry for the loss of your sweet boy. ♥ My Forever Child is absolutely amazing and you are such an inspiration. I have a bracelet from MFC that love dearly. Thank you.

  2. Lacy Sanchez says:

    Your story made me cry. I am very sorry for your loss. I know that there is nothing that I can say or do to ease your pain. I am here for you any time you want to talk or need a shoulder and i want to thank you for sharing matthew with us. You are an amazing woman. Big hugs and lots of love to you

  3. Anonymous says:

    Thank you for sharing your story. My story is similar. I lost a son in 2008 at 21 weeks. I have a blood clotting disorder called MTHFR, which is similar to Factor V. I had partial abruptions with all of my pregnancies (2 before the loss and 1 after). Although with my last pregnancy, I was on Lovenox to help prevent the clotting. (We didn't know I had the clotting disorder until after we lost our son.) You made a necklace that I ordered for my husband and he cherishes it. One day I'll get one for myself. I feel like I went through a year of hell on earth after we lost him. With counseling, a little medication, and a fourth successful pregnancy, I came through. Thank you so much.

  4. Danielle says:

    Susan, I'm am utterly in tears reading your story. I believe we have met in person too at a Walk to Remember in Eisenhower Park 2-3 years ago, I remember your set up of jewelry. I'm so sorry for your loss of Matthew but your courage and strenght have made a wonderful outlet to help other moms and dads in their grief. Thank you for that. I also lost a baby to stillbirth, and I'm also a NY State resident fighting with you for the CBRS bill. Thank you again for sharing your story. I have shared my story here too. I'm face 1038.

  5. Rachel Weber says:

    Susan, Thanks for sharing your amazing story with all of us. Your strength and healing is an inspiration to alot of people i'm sure. For you to go to one of life's most devastating losses and to turn around and build an amazing company that helps others is truely amazing. I have not lost a child but I do know people who have and when I sent them the link for your business they were so thankful! Thanks for sharing Your story and for telling us about your lil Angel Matthew! God Bless You and Your Family!

    Rachel Danekas Weber

  6. Holly says:

    I so wish that Matthew were here with you. :(

    I can see (and have experienced!) the impact of the work that you do through My Forever Child and I have no doubt that you do the same through what you do locally. God is using you to do many great things!! I am sure Matthew is so proud of his mommy!

  7. Margui says:

    Hi Susan: I was hard to read your story. I had a miscarriage last week when I was 7 weeks pregnant. Now, I understand how you felt, the pain is unbearable and I will always remember my little one who doesn’t even have a name and also cried a lot when I read the poems.

    I understand my parents even more, they worked so hard to give my siblings and me a better future. I don’t know when my husband and I will try for another baby, but I hope God send us a new baby to transform this pain into joy, but he/she will not replace the baby we lost. My little Angel will always have a special place in my heart.

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