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Please help with Nylah's funeral expenses!
$2,411 Raised
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Ended May 1, 2014
Thank you to everyone who has supported us throughout our family’s journey over the past year and helped us celebrate and mourn the beautiful, unexpectedly short life of our precious little daughter, Nylah Eva Sarfati. Nylah was born January ... More ...

Thank you to everyone who has supported us throughout our family’s journey over the past year and helped us celebrate and mourn the beautiful, unexpectedly short life of our precious little daughter, Nylah Eva Sarfati. Nylah was born January 25th, 2014 at 12:30AM. After struggling with an unexpected chromosomal defect, we said goodbye to our baby girl on January 31st, 2014. Nylah touched our hearts in an indescribable way and we will never, ever forget her. We’re blessed to have been chosen to be her family.

As we mourn our loss of our baby girl, we are left with the tasks of picking up the pieces and reorganizing the life we had planned to have with our daughter. During this difficult time, we find ourselves faced with the intimidating financial challenges of meeting the costs of burying our little girl and accommodating for childcare for our son, Kylan, in the absence of anticipated parental leave benefits.

It is important to us that Nylah be laid to rest in grave where Mommy and Daddy can join her someday. We've had to purchase 2 adjoining cemetary plots (1 for Nylah & Mommy, 1 for Daddy right beside us), and a headstone which we will share. Please help us in any way you can as we try to cover this expense. We thank you from the bottom of our hearts!

                                 *************     Nylah's Story    **************

Thank you to everyone for sharing in our journey. Although the physical loss of our baby girl is heartbreaking, I want us to remember all the beauty in life. I want to tell about the things Nylah taught me.

When I first learned I was pregnant, I was scared. It hadn’t been planned, and the timing seemed really bad. I would still be in school finishing up my Massage Therapy program when the baby was born. Dani and I had our wedding which we were planning for February. And since I hadn’t been working, there would be no maternity benefits. I didn’t know how we’d manage, things were already tight with me being in school and receiving student loans. But our family pulled together and everything that felt wrong, started to feel right. We felt like we’d probably only have the one baby together, and we were excited by the thought of completing our family. I was happy with the age difference between our little Kylan and the new baby, and the ages that Dani and I were. I fantasized about family trips when I would be in my 40s, with our teenagers. Right from the beginning, we felt that our little baby was special, and very strong. I was actually nervous about dealing with a very strong willed teenager someday, and an Aries girl, to boot (her due date was smack in the middle of the sign)! Since Dani and I had had to cancel our original honeymoon plans (skiing while 9 months pregnant is generally *not* recommended!), we decided to take a pre-wedding honeymoon to the Dominican Republic. It was on our first day there that we got the call from our midwife, Debbie, telling us that something had come up on the anatomy 20 week ultrasound scan. I listened to her explain how an omphalocele had been noted, a very rare but serious birth defect where abdominal organs develop outside the baby’s body (1/5,000 chance of occurance). We didn’t know how large, but there were very serious complication associated with omphalocele, including genetic anomalies not compatible with life (30%-50% of omphalocele cases). However, in at least 50% of omphalocele cases, surgical correction was possible with very good long term prognosis. I thought my heart could never break more, or I could never survive such fear. Was this baby not meant to be? Dani and I struggled together, but in the end, we still felt that our baby was so strong. We would let our baby show to us what she could do!

After coming back to Toronto, we started being monitored regularly at the Mt. Sinai high risk pregnancy unit. We were encouraged by how active our baby always was in the womb, and how strong her growth was. After the nervous wait for the chromosome results from the amniocentesis, we were elated when the tests came back normal. Later, we also had a fetal echocardiogram to assess our baby’s heart at SickKids hospital. Our results were again normal. To everyone’s knowledge, we were looking at an otherwise healthy baby, with an abdominal wall defect which would be surgically correctable. I joined a support group online for omphalocele (MOO – Mothers of Omphalocele) and was encouraged by the all the pictures and stories of sweet little champs running around and playing, with only a scar on their belly and no belly button to show for their battles. It was still hard to think that my innocent little baby would have a rough start to life and have to endure surgeries at such a young age.

A few weeks later, my belly seemed to explode overnight. I went from measuring slightly small, to measuring several weeks ahead. It felt like my skin was tearing apart. I was confirmed as having developed polyhydramnios, a complication where too much amniotic fluid builds up in utero. It is not especially uncommon with omphalocele babies, who often have difficulty swallowing (which helps regulate amniotic fluid level). My case was rather severe, and the increased pressure caused my cervix to flatten out, putting me at risk of spontaneous labour at any time. I was put on reduced activity, right during the holidays and when we were in the middle of moving (to be closer to the hospital, and closer to my school for when I could go back to finish my program, and to save money by living in a smaller apartment), and given steroid injections at 26 weeks to mature the baby’s lungs, in case of imminent delivery. Again, I was terrified. The challenges to such a premature baby would be significant, on top of the omphalocele. Also, there are increased maternal risks when so much pressure is being carried. I did my best to listen to my body and hoped our baby could stay in and grow as strong as possible.

At 29 weeks, I went to the hospital for an amnioreduction to take some of the fluid out. The benefits of the procedure outweighed the risks at that point (potential to cause labour, or placental abruption). The reduction went well and I felt relieved that we’d gained some time. I knew the effects of the reduction were temporary and that the fluid would come back, but each day the baby could stay in utero improved our prognosis. I expected I would have to have another reduction in about 2 weeks. However, over the second week I noticed a gradual slowing of the baby’s movements. I thought it was due to the fluid coming back, and maybe the baby just sleeping and growing more. A sense of unease started to develop, however. Nylah would always move around, especially in the morning. On Friday, January 24th, I didn’t feel her in the morning. Throughout that day, I tried to be especially aware and feel what was happening in my body. I ate some sugary food, to try to give her a bit of a sugar rush. I tried starting the vacuum cleaner, to startle her…but I couldn’t get any strong movement that would make me feel comfortable, so with an increasing sense of urgency, I went to the hospital to be checked. I still thought that the baby was probably fine. At the hospital, they put me on the monitor to check the baby’s heartbeat. At first Dani and I were both very relieved to hear Nylah’s strong, regular heartbeat. But the doctors seemed concerned for some reason. It turned out that Nylah’s heart rate was abnormal, in that it didn’t have any acceleration dynamics. It was just flat. They brought in an ultrasound machine and saw that Nylah wasn’t moving at all…her body, her fingers…everything looked like a statue. I felt a very deep, sinking fear. Why wasn’t my baby moving?? They called in other specialists who looked at Nylah, and shortly after an IV was brought in. At first I thought they would do another amnioreduction, but then they told me that they didn’t know why the baby wasn’t moving, and without being able to assess her and treat her, the risks of continuing the pregnancy were too great. I would need to have an immediate Cesarean. All I wanted was for our baby to be alright and be able to move. I just nodded in shock and gave my consent for whatever the doctors felt best.

After seeing little Nylah frozen in my body, through the ultrasound…I was low on faith that she would be “alright”. I asked the doctor if he’d ever seen a situation like this turn out ok, but was just told that maybe, but that she needed to be out as soon as possible. Throughout the Cesarean, Dani held my hand and I tried to breathe as time and reality became a play in contrast between fast/slow, sharp/blurred. They took Nylah from my body, and I felt and immediate sense of emptiness. She was rushed to the room next door, and my mind and heart followed her there, just begging…be ok, please move and be ok.

After Nylah was able to be stabilized, I was filled with joy. It felt as though we’d made it, we’d saved her and everything now was just manageable recovery. While I recovered from surgery, Dani stayed with Nylah and listened to her doctors talk about the surgical plan for correcting her omphalocele and helping her with her breathing, blood pressure and glucose. When Dani first visited her, she moved when she heard his voice! I was so happy!

We knew our little girl was strong, but we didn’t realize how strong until the next day. A geneticist had talked to Dani briefly about running some bloodwork for defects. I thought that was a little strange, since we’d already been cleared for genetics, but I assumed it was just routine. Later, I got the visit from Dr. Mendoza at Mt. Sinai. He told me he suspected Nylah had UPD 14 Paternal. I didn’t know what that meant, but tried to file the information in my still struggling to catch-up mind. He gave me his card and told me to call him if I had questions. After he left, I of course immediately turned to Google. UPD 14 Paternal is an incredibly rare genetic condition. There are only a handful of documented cases, worldwide! Because it is so rare, it is *not* routinely checked for. The prognosis is not good, and the condition is not compatible with life. At first I thought that the doctors must be wrong, they were just looking for answers as to why Nylah had stopped moving in utero. But as I stayed up all night, in pain from my surgery, curled on my side…I saw the symptoms starting to line up…abdominal wall defect, polyhydramnios, preterm birth, the scoliosis, joint contracture, webbed neck and low brain wave activity which had all only become apparent after she was born. The main indicator however, remained her bell-shaped chest and “coat hanger” ribs. Her special little ribs which would never allow her lungs to develop enough to breathe on her own. Alone in my hospital bed I cried in shock and heartbreak. How could this have happened? Nylah had been so, so strong throughout the pregnancy! Even at birth, she was born at 30 weeks and 6 days, weighing 4 pounds, 5 ounces…a very positive weight for a baby so early! And she was beautiful. When I looked at her, I didn’t see any “defects”, other than the IVs, tubes, tape and monitors all over her.

When Dani came back to me the next day, we found out that we had each done our research and learned about UPD 14 Paternal. We mourned together. We knew that when Nylah had been slowing down in my belly, and stopping…it was merely the ending of her natural lifespan. We had been able to interfere and prolong her life through aggressive medical intervention, but her natural body could not stay with us. She would not come home with us. We would not be able to hold her, free of lines and wires. I would not be able to feed her with my milk. She would not grow up surrounded by her family. Kylan would never be able to play or tease his little sister. If anyone could’ve told me in the past that I would have to live through such a scenario, I would have confidently told them that it would have been impossible. I would lose my mind, I could never endure such tragedy. And for that night and day, I did feel like my heart was bleeding out.

But throughout pain I’d never imagined I could have endured, other feelings started coming out. I felt an intense pride in my little daughter. With such a fragile little body, she had survived where perhaps millions of other embryos would have miscarried before their parents ever knew them. She survived in utero to nearly 31 weeks! And continued to be alive with medical intervention. Her case is so rarely seen, as these little bodies don’t make it nearly so far. But Nylah did! Our little champion, our little fighter. Her spirit is a giant, of love and strength and inspiration. Nylah’s Mommy and Daddy share a special bond. Through difficult relationship pasts, Dani and I have found a deep, pure love between us. It has been an incredible gift to be able to have each other to hold. Our love brought Nylah to us. Our strong love flowed into our little, tiny baby and she took that love and strength into her. Our strong baby girl was going to be here, she was going to meet her family and touch the lives of so many. I am so, so thankful to have been able to carry Nylah, and spend time with her. I’m in awe of her. Nylah has become my inspiration.

When I was pregnant, I had all kinds of little anxieties. I was nervous about having a daughter…worried about the societal pressures on girls…worried about my own abilities to connect with a little girl, having had a complicated relationship with my own mother…so many little worries, that in the end didn’t matter at all. When we had to say goodbye to our little baby, she was held warm and safe in her Daddy’s arms. I had wanted to hold her, to give her all the comfort and love inside me, but seeing her in peace gave me joy in the sorrow. When she quieted, it was so calm, so gentle. As her little body stilled, I felt an energy like I had never felt before pour out of her. An energy so powerful, it felt like the sun. As I looked at her little face, finally at peace, I saw something special. I saw, as through double vision, our little Nylah opening her eyes…eyes which were bigger and clear. Her small mouth smiled…and then a strong image filled my mind. An image of a clear, blue sky with a bright shining sun…and a little girl, 4 or 5 years old, smiling and laughing at me. I’m not a superstitious kind of person, and it’s been a long time since I’ve had an experience I could really call spiritual, but I know I saw the spirit of my daughter at that time. She was full of love and happiness, and knowing that gives me comfort, still.

Nylah taught me what true love and belief are. Our family has a special bond, and Nylah brought us closer together than ever before. Although I carried Nylah, she always had a special connection to her Daddy. Throughout the pregnancy, I experienced so many unusual symptoms, which when I mentioned them to Dani, were common things that *he* usually had. I craved foods that were his favourites. When I lay down close to Dani at night and he spoke to me and Nylah, Nylah would move to be close to him. When I was in hospital for my amnioreduction and couldn’t be close to Dani, I felt like Nylah was upset. After Nylah was born, she was most calm in her Daddy’s arms. Long before, I had had some silly emotions about maybe the baby would love her Daddy more than me. Of course, I felt that Nylah loved us both, and seeing her calm, snuggled in her Daddy’s arms, gave me great joy.

I would never have thought I’d have been able to go through everything that we did. I don’t feel like a strong person. Nylah taught me how anything is possible with great love. Dani and I made Nylah with love, and that love has grown stronger through the gift of her. We believe love made her strong, and will keep us strong together. Although Nylah couldn’t stay with us physically, her energy and spirit surround us. I know our daughter lives on, and now that she’s free of her little body, she can dance and play in the sunshine. She is the sweetest and most beautiful little angel.


Now that we’ve gone through the journey of Nylah’s short physical stay, as people forever changed, we must reorganize our lives. For the human body of our baby girl, the most economical option – cremation, is against our beliefs and culture. It is important for us that our physical bodies rest together. As such, we’ve had to buy 2 burial plots. One for Mommy and Nylah, and one for Daddy right beside us. We bought one headstone, which we all will share. The expenses for these arrangements have been much more than we could have anticipated. In addition, our plans for going forward have had to be altered. Dani was to have taken parental leave from work this year, so that I could return to school part-time to finish my Massage Therapy program while Dani cared for 5 year old Kylan and our little Nylah. I had forfeited a $10,000 grant for school by interrupting my last term and would not be able to get further student loans. Without having Dani at home to care for Kylan over the summer, we’re in the difficult situation of trying to assess our ability to afford childcare, as well as the tuition cost for me to return to school to complete my final term. It is difficult for us to ask for help financially, but we are truly appreciative of any donation we receive. We have faith that we will make it through, and when I’m scared, I remember Nylah and her strength and know everything will be ok.

Thank you from the bottom of our hearts for the overwhelming messages of love and support. We feel held in the extended arms of our friends and family, near and far. To see the lives who have been touched by Nylah is incredible. Her spirit has drawn so many people together, it’s changed the way I see the world. Thank you to the Toronto Hospital for Sick Children, who supported our family with genuine care and loved Nylah right along with us. I’ve never seen such a compassionate team of doctors, nurses and support workers. We will strive to contribute to SickKids any way we can in the future.

And most all, thank you to Nylah. Nylah Eva Sarfati. The girl who survived almost impossible odds to meet her friends and family, and touch us all. I love you.

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