Shane Haley

Our son Shane Michael Haley: They called him the Bucket List Baby
 

On October 9th, 2014, Shane Michael Haley, our first child, was born. He only lived four short hours, but he left an imprint on this world that most could not in 100 years. This is his story.

Getting the Diagnosis

On March 30, 2014 we were driving home from Penn State University after visiting Dan's brother Jim who plays baseball for the Nittany Lions. The roads were very icy and we spun out driving 55 mph on the highway. Luckily, after hitting the guard rail and median twice, no one was injured. Jenna was about 12 weeks pregnant so we decided to go to the hospital to check on the baby. 

The doctors performed an ultrasound and said the baby looked fine but blood tests indicated that there was some fetal bleeding. They told us to follow up with our OB and then our OB recommended us to a specialist. 

On April 10, 2014 I went with my mom to the ultrasound appointment with the specialist because Dan had work. It was the day that we were going to announce to our friends that we were expecting, but we wanted to wait until after the appointment to ensure that the baby was healthy. 

The doctors decided to do an internal ultrasound and as we watched the baby move the doctors snapped pictures for us. After the ultrasound technician was finished, the doctor came back into the office and said, "We have a problem." My mother and I cried as we thought that we had lost the baby. We were confused as to what had happened after seeing the baby move so much. We were then brought into the office to receive the news that no parent wants to hear. 

"Your baby has anencephaly, a neural tube defect in which there is no survival rate." 

We asked so many questions as to how and why this could have happened. Our doctor told us that people usually terminate these babies and my mouth dropped. We said we would be carrying the baby to term. 

Our baby would be leaving us so soon

I was speechless and my head was spinning. I couldn't believe that our baby would be leaving us so soon. I left the hospital alone and headed toward Dan's. I gave him a call and told him we needed to talk and I’m sure my voice said it all. I pulled up to find Dan waiting outside. I ran over to him with the pictures of our baby and clung onto him in tears. I told him that our baby has anencephaly and that we would carry him to term but he wouldn't survive. 

We held each other and cried just looking at the pictures of our baby. We saw nothing wrong with him. 

We decided we needed time away to be with our thoughts and headed to the Jersey Shore. It was our four years anniversary and two days prior we received the most terrible news of our lives. We were numb and needed to take some time away. We both decided that our baby needed us and no matter what we were proud of him/her. We decided to post our birth announcement, letting everyone know that we were expecting but to keep our child in their prayers because of his diagnosis. 

As our due date approached we had many doctor visits that ended with tears and heartbreak, but we knew our little one was a fighter. 

On May 23, 2014 we went in for another visit to find out whether we would have a little boy or little girl. We had a reveal party with family and close friends. Our sisters made a cake for the reveal party and when we cut inside the cake we found out that we were expecting a boy! 

We decided to name him Shane Michael Haley.

Creating a bucket list...

We created a bucket list of places for our family to make memories and Dan made a Facebook Page so our friends and family could follow our adventures. We traveled to Cape May Zoo, Ocean City Maryland, Geno's Cheese steaks, New York City, Spruce Street Harbor Park, baseball games, and even Lancaster for a train ride. These big adventures were for a little boy who gave us the greatest title in the world, mom and dad. Our family memories were documented by pictures and Facebook posts on our page. 

Mum, Dad and Shane...

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Our friend Chelsea, a writer for a local news station, asked us if she could write a story about our journey with Shane and we agreed. NBC10 in Philadelphia posted our story on their Facebook page and soon after many people started to follow our adventures as a family. We did an interview with a few more news stations, one of which aired on the primetime news station in Philadelphia 6ABC. 

We found comfort in sharing Shane's story and reading through the stories of those who posted on our page. 

When we started Shane's Bucket List his Facebook page had a few hundred followers. When we finished our bucket list a few months later, the Facebook page Prayers for Shane had more than 955,000 followers. 

It was amazing to witness the impact our little Shane had on so many people throughout the world. 

As the pregnancy continued my amniotic fluid levels were showing that I was two weeks farther along than was normal. This is called polyhydramnios and is common in many anencephaly pregnancies because the babies do not usually have the swallow reflex. This led to many meetings with over 25 different staff members to prepare for Shane's delivery. 

Mum, Dad and Shane...

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Making precious memories...

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Meeting our precious son

We agreed to induce at 39 weeks and two days because the fluid levels continued to rise and became a threat to Shane's delivery. 

The last Sunday before Shane's arrival we gathered our family together and celebrated Shane's 39 weeks. For 39 weeks we carried our son with us through adventures together as a family. We created memories that would last us a lifetime, and a journey that, in itself, was a miracle. We learned what true love was, and what it meant to be parents to a child who wouldn't be here long on earth with us. We celebrated every second together as a family. We prayed for a miracle. We prayer that no matter what happened we would accept God's will for our lives and the life of our son.

Hello Angel...

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Spending precious time together...

On October 7, at 39 weeks and two days, we entered the hospital for our scheduled induction. It was an extremely long and arduous process. All three of our OB's were involved and we were so thankful that they were there for us. Both of our families, totaling 23 people, waited patiently in the hospital waiting room. 

At 2:25am on October 9th, Shane made his entrance into this world after only 15 minutes of pushing by Jenna. 

He was perfect! At 6lbs. 9 oz. and 19 inches he was a chunky little man. 

The moment Shane's eyes met ours was an experience like no other. I remember crying tears of joy because I was so happy to finally see his little face. He had his dad's lips and nose just like I had seen in the ultrasounds. He had a full set of hair just like his mom. Our nurses and doctors allowed our priest and all family members to come back into the room along with two photographers. Shane was baptized into the Catholic faith and everyone was there to witness it. Dan and I were the only ones to hold Shane while photos were being taken with family members by our bed side. 

The only time we heard Shane cry was when the photographer asked us to move him up a bit and thankfully we got his beautiful little cry on video. Shane kept his eyes open, looking around at all of his family who waited for his arrival and who celebrated his life both in and outside the womb.

After about an hour and a half everyone let us have our time alone with Shane. We talked to him, kissed him, held him, and loved him for two more hours until Shane passed away peacefully in my arms at 6:05 am. 

We called our family members and let them know of our angel's passing. Many of Shane's aunts, uncles, grandparents, cousins, and friends came to hold him after he passed. They held him close and kept him warm. 

Dan and I were able to keep Shane in our arms for 36 hours. We gave him his first bath, read him his favorite book one last time, prayed with him, and sang happy birthday to him. 

I finally get to meet you Dad...

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Those 36 hours were the hardest yet most amazing hours of our lives. But one thing we knew for sure what that love truly conquered all. The pain we experienced and will forever experience is worth every second that we had with him. He taught us a love we had never known before he entered this world.

Giving Shane to the funeral director at the hospital was a pain that haunts me to this day. I remember being wheeled out knowing this was the last time Shane would feel his mom and dad's hugs and kisses. We left the hospital empty and broken. A feeling that no parent should ever feel, and a hole in our hearts that will never be filled.

Goodbye sweet child

The following week leading up to Shane's funeral we had countless visitors. Friends and family helped us get through our most difficult times. The night before the funeral we had people help us make green ribbons to wear in honor of Shane and one of Shane's cousins and uncles also made wristbands for people to take in honor of Shane. 

The funeral mass was beautiful, but seeing his casket sitting to the right of us made it seem all too real. Reading a eulogy for my baby was something no father could ever dream of but I was honored to speak on behalf of my son. We buried Shane in the angel section of our cemetery where he rests with all the other baby boys and girls who were called to heaven way to soon. We visit Shane multiple times a week and still read him his favorite book. We remind him we love and miss him and we update him on things that we are doing in his memory. 

We miss our son more each day, and as some people know time does not heal all wounds. We are so proud of the impact Shane made in bringing awareness to anencephaly, and showing the world that no matter how small or how limited your time here on earth is, you can leave an impact that will last for generations. 

You brought this world together and proved that every life, no matter how short, is so valuable and should be protected and respected. 

Shane has nine uncles, two aunts, four grandparents, and many cousins and friends that miss him dearly. We are forever changed by Shane and are thankful for the time that God blessed us to have him here on earth. He is forever our little angel in heaven. 

Thank you to the many people who followed our story and prayed for Shane and our family. Thank you to our many family and friends who helped give witness to life. Each and every one of you hold a special place in our hearts. 

Written with love in honor of our sweet baby Shane Michael Haley.  Mommy and Daddy love you to the moon and back.

Dan and Jenna on Newstalk with Colette Fitzpatrick

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ANENCEPHALY is a neural tube defect which means that the baby's skull and brain do not develop correctly in the womb. A recent study published in the British Journal of Obstetrics and Gynaecology found that 72% of babies with anencephaly lived for a short time after birth. Of those children, 25% lived up to 5 days, while up to 7% lived up to 28 days after birth.

Jacquier M, Klein A, Boltshauser E. 'Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly.' British Journal of Obstetrics and Gynaecology 2006; 113:951–953

Links Baby Shane's Facebook Page Support organisation in the UK Carrying to Term