Special Delivery

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A Project Born from Love

Welcome to Special Delivery, the website, a place where you can come for support, find helpful resources, and request an electronic or board book version of Special Delivery, the children’s story.

When I was pregnant with my second daughter, Macy, I went to many online sites looking for other people who were going through something similar to me—a mom pregnant with a baby who she knew was going to die. Macy was diagnosed with trisomy 18 when I was eighteen weeks pregnant. As a pediatrician, I knew immediately that it meant that she likely would die before she reached her first birthday. In fact, it’s estimated that half of babies with trisomy 18 are stillborn or miscarried, and of those born alive, around ninety percent won’t make it to that first birthday. Still, we had hope.

Then Macy was diagnosed with cogenital diaphragmatic hernia, the consequence of which meant that she would have very poor lung development. Coupled with her trisomy 18, we knew that she would not be someone the surgeons would take to the operating room for repair. Still, we had hope.

Then we had a fetal echo done and it was confirmed: Macy had very complicated heart disease, which included an AV canal defect and double outlet right ventricle. Every step of the way we were crushed. Maybe with just one of those three things, we could hope to bring Macy home, even if just for a short while. Rational or not, my husband and I continued to hope.

It didn’t hurt that we were surrounded by an enormous amount of support pouring in from our family and friends. On top of that, I met many friends online who shared their personal experiences with their own babies with trisomy 18.

In the face of so much uncertainty, my husband and I were struggling with how much or how little to tell our precocious two-and-a-half-year-old daughter about her new sibling. One sleepless night, the words of Special Delivery came to me, and with it the vision of what these words could mean for Katerina and other siblings who might be faced with a similar situation.

My twin sister, Melissa Tioleco-Cheng, who is an artist and graphic designer, illustrated the words and we read the book to Kat on my computer. Although she didn’t completely understand at age two what it means to die (I’m still struggling with the same thing and I’m in my thirties), the words and pictures were a wonderful starting point. Kat had many questions about breathing and chromosomes and hearts and lungs and hospitals and we patiently answered all of them. Repeatedly.

When Macy was born, it was as if the stars truly aligned. Everyone who we wanted to be with us made it to the hospital in time, including Macy’s doctor and the photographer from Now I Lay Me Down to Sleep. Even with all the uncertainty, we felt blessed for all that happened—we met Macy (alive) and we were able to look into her eyes and tell her that we loved her. Kat was able to meet her sister as soon as we went into the recovery room. All of our immediate family were able to spend time with Macy. And Macy….in her two hours of life outside of me, Macy was surrounded by nothing but love.

For Macy’s funeral, Melissa was able to have a handful of copies of Special Delivery printed through a local printer. Our dream was to eventually have them printed and distributed to other grieving families or families going through a difficult pregnancy like ours. Fast-forward to 2011, Melissa and her design firm, rise-and-shine studio, applied for and won a Sappi Ideas that Matter Grant to publish and provide free books to families and support groups.

Shortly thereafter, our other sister, Diana Cheng Scheible, joined the team to fortify and help keep this project afloat for families after the first print run is entirely distributed.

We are excited to share this bit of Macy’s legacy with you and we hope that Special Delivery is able to help you and your family.

 

Melanie Tioleco-Cheng | April 24, 2012