Vincenzo was born sleeping on November 28, 2014. He was 2 pounds, 11 oz and 16 ¾ inches long. He had a full head of light brown hair at only 28 weeks and was absolutely perfect. They weren’t able to find a cause of death on his autopsy which was difficult to take in; however, it’s very comforting to know my son was absolutely perfect.
On the morning of July 9, 2013 our world was changed forever. I was 37 weeks pregnant with our second child (I had a miscarriage at 9 weeks in March 2011) when I was at the doctor for a "routine" check-up. As the doctor was attempting to listen to the baby's heartbeat, he looked up at me and said, "I'm sorry. There's no heartbeat."
They say losing a child is the most devastating thing a person - a woman - can go through and I must say we agree.
In the hours that followed, I would be induced and deliver our baby boy. We named him Sydney Jon Hillman and he was born asleep at 8:57 pm. He weighed 4 pounds 14 ounces, 19-1/2" long and absolutely beautiful. It was the greatest and worst day of our lives. We finally got to hold our son but we would never hear him cry, never look into his eyes. We would not get to take him home. We miss him every minute of every day.
Sydney’s (maternal) grandmother got to hold him and touch his toes. A moment she will never forget. Our best friends, to be his Godparents, came to the hospital to support us. Sydney’s Godmother who happens to be a pastor, baptized him and a few days later presided over his funeral service. Moments, she later told me, were the hardest of her professional career.
As we struggle every day with the loss of Sydney Jon Hillman, I am determined to help other families when their child is born still. I have decided to provide keepsake boxes to my local hospital in hopes that the contents will ease their grief, even if it's only in the tiniest amount. I try to include a candle, a brag book or small photo frame, a CD, two small stuffed animals (one for baby & one for the family), a disposable camera, a journal, tissues, a bereavement book, a small container for a lock of the baby's hair and a homemade sewn or knitted blanket. Also a guidance packet of information on local support groups and websites that may offer comfort is included. Providing these boxes helps me keep our son's memory alive… although we could NEVER forget him.
Kate was diagnosed with Hypoplastic Left Heart Syndrome at her 20 week ultrasound. She also developed additional complications which made surgery impossible. We decided to provide comfort care and to cherish each moment we had with her. Kate died in our arms, next to her surviving twin sister. She will be forever in our hearts.
Celia was diagnosed at 18 weeks with Holoprosencephaly. Her brain did not fully develop. She fought in her mother's belly, she fought through delivery, and she fought to live for nearly four days. She defied all of the odds by surviving. She was loved and cherished more than enough during that brief time. She helped her big brother celebrate his third birthday and brought joy and hope to her family. Celia has been a tremendous inspiration to anyone who had the privilege of meeting her and to anyone who has heard her story. We will always love you.
At our 18 week sonogram we found out that our baby had a very rare tumor, called a cervical teratoma, growing on her neck. Although this condition can be very treatable, the main complication is that the tumor can restrict the baby’s airway at birth. The key was to get me to a safe point in my pregnancy and then deliver her via a surgical procedure called an EXIT procedure.
Unfortunately, I went into labor at 25 weeks and my water broke at 26 weeks. Isabella was born the next day. She was beautiful, perfect and 14 weeks premature. She had a full head of dark hair, was 14 inches long and weighed just under 2 pounds. The first time I got to see her, she opened her eyes when I called her name. She was a fighter, fought hard to the end and died in our arms. I am a better person because of her. Our hearts will never be whole and the pain never goes away, but we are grateful for the time we had with her.
Our son Alec James Louis Kahler (A.J.) was born on November 12, 2007 with a congenital heart defect known as Tetralogy of Fallot. My husband and I had found out that A.J. had a heart defect at our 18 week sonogram. The doctors did not know how soon A.J. would need his surgery, but they were certain that he would require at least one to survive. After being born at Mercy Hospital, A.J. spent his first week at Children's Hospital of Pittsburgh where they monitored his heart defect and also found out that he had hemivertebra in the cervical and thoracic part of his spine. Our good news, though, was that he would not need his heart surgery right away and we were able to take him home to his big brother, Ashton, on November 18, 2007.
After numerous weekly doctor's appointments that first month, it was determined that A.J. would need his heart surgery sooner rather than later. His heart surgery was scheduled for December 18, 2007. The doctors had a positive outlook and told us that he had an excellent chance of survival and he would be able to “run a marathon” when it was all said and done. There were complications during A.J.'s surgery and he came out on life support (ECMO). He spent almost 3 weeks in the hospital, on and off ECMO, fighting every day for his little life before he passed away on January 4, 2008 - just 7 ½ weeks after he was born. This had certainly become the worst day of our lives followed by the nightmare of telling his 3 year old brother that A.J. would not be coming home. The unthinkable had happened to our family and since that day we have been trying to guide our efforts towards making something positive out of losing A.J.
We try to honor A.J.'s memory every chance we get. With the help of our family and friends we donated 8 beautiful rocking chairs to the CICU unit at Children's Hospital of Pittsburgh in his memory. We also are part of a non-profit organization called Zachary's Mission that delivers snack sacks to the families in the cardiac intensive care unit at Children's Hospital
This year we are hosting the 3rd annual "Remember An Angel, Swing For a survivor" Golf Outing in loving memory of A.J. All of our profits go to the Alec Kahler Memorial Fund of The Children's Heart Foundation. In the past two years we have raised over $40,000 that has gone towards the research of congenital heart defects. We are thankful to have found such a wonderful organization where we can help fund some of the most promising research projects for Congenital Heart Defects. It is my hope to save another parent from ever having to go through this heartache of losing their child.
Since A.J.'s passing, I have attended the Aching Arms Support Group. A wonderful network of mothers and fathers whose heartaches are heard and whose shoes each of us have walked in. The monthly meetings have been inspiring and comforting to the point that you do not feel you are alone. It is hopeful to see how other people have made it through the worst tragedies of our lives.
We hold A.J. close within our hearts and he will always walk with us throughout our lives. His was a precious life that will be forever in our hearts. We miss him more than anyone will ever know and he will always be our fighting hero and our precious, treasured angel.
Our daughter, Emma, was born Aug. 22, 2007. She came 12 weeks early due to Preeclampia. Emma was born 1 lb. 6 oz, 11 ½ inches long. She began life kicking and screaming and the doctors told us she would be just fine and ready to leave the NICU in November when she would have been born full term. Emma developed her first infection during her first few weeks of life. She was operated on and would have grown up with short gut syndrome. She had several trips between two different Pittsburgh area NICUs. We noticed she had developed a bump on her left eye. It was misdiagnosed a few times before a scan revealed she had a hemangioma which had grown partially into her eye socket and under her brain. The doctors attempted to lance the hemangioma, to put steroids in it, and other attempts.
On January 16, we got to bring Emma home for eight wonderful days after 147 days in the NICU. Emma had contracted C-Diff and we took her back to one of the hospital an hour away since they knew her the best. She recovered quickly from C-Diff but her hemangioma was getting worse. A decision was made to operate on January 28, 2008. Emma passed away during surgery. Our way of honoring Emma’s memory is to have a walk each year near her birthday and we have started a foundation that supports Pittsburgh area NICUs.
We were blessed with a beautiful daughter 11 years of age and a handsome, intelligent son 7 years of age. We were also at a point in our life where we wanted another baby. It wasn’t hard for us to become pregnant and maybe that made us a little too comfortable as we had “been there, done that” twice already. Candace’s pregnancy was nothing short of text book. I was in awe as if it were the first time when I felt our Lilly react to my or Candace’s voice by kicking which Candace described as the fluttering of a butterfly. Up till the baby shower, everything was great, we had over twenty people show up and it was a lot of fun, even for me. That following week (on Wednesday), we woke up to a typically normal day. Lilly was not moving as much but we wrote it off as Candace being exhausted and Lilly being bigger and possibly running out of room (Candace at this time was 371/2 weeks pregnant). I left for work in my car and Candace had a scheduled doctor’s appointment.
Nothing could prepare me for the devastating phone call that I received on my cell from Candace who was crying hysterically and unable to speak in a complete sentence. At first I thought that she was in labor and I was for a micro of a second excited until I was able to put the sentence together. Her words were “there is no heartbeat”. In that instant, the world stopped, time froze, and it felt like the oxygen was sucked out of my body. Without a second thought, I jumped in my car and drove 80 mph down University Blvd to route 65 to 279. I arrived at Magee in roughly 25 minutes. Candace was still crying but was able to tell me that they checked with a Doppler and gave her a sonogram and confirmed any parent’s worst nightmare – that their unborn child has died. What didn’t dawn on us at the time was that Candace still had to deliver that day! Now it became a matter of Candace’s life. The doctor induced Candace’s labor and we both waited nervously and I prayed that this was a mistake or even better, a bad dream that I had not yet awaken from. Candace labored for four hours and delivered Lilly. She was four pounds and was so beautiful. She had curly black hair, Candace’s nose, and my complexion. I held her for a long time often catching myself rocking her as if she were sleep. The Nurse came in, dressed her, and prayed the Lord ’s Prayer with us. This was my emotional breaking point; I couldn’t be the strong man anymore. I had to let it out or go completely ballistic.
We kept Lilly with us for a couple of hours, I took pictures which kind of made me feel weird but the reassurance that I would never see her again encouraged me to keep snapping. We were discharged a couple of days later and had to make the funeral arrangements. We had Lilly cremated and her ashes are kept in a little music box about the size of a can of Pepsi. That is a chapter in our life that changed us forever and the book will never be closed on Lilly. This year, we introduced into the world our son Justin. He reminds us so much of Lilly and we are so much more grateful and cherish every waking moment with him. Only God knows why our babies die (even without being diagnosed with a medical condition). It is not fair but it is Gods’ plan. I strongly believe that we will be re-united with our lost love ones when we die but until then, we will dream and never forget the moment that we spent together as a family…
Chris and Candace Neal – Lillian Elise Neal February 22, 2012 – February 22, 2012