Jude's Story

Jude's painting. By his Aunt Heather Storey

Jude was the child God had for us from the beginning. We will probably never know completely why we weren't able to spend this life with him, but we wait with eager anticipation for the day we will all be together again in Heaven. This is how his story began:

He was our first. We'd been trying for a while, and were absolutely elated when we found out I was pregnant. Our lives seemed to be going according to plan. My nursing career was in a good spot for having a baby (though my immediate plans for graduate school had to go on hold) and thanks to my job and Jess' Air Force scholarship for medical school, we felt financially prepared. Everything seemed perfect.

The first doctors visit it felt like I had a rock in the pit of my stomach. I wanted so badly for my baby to be healthy, and I was so nervous! Then I saw that little flutter on the screen, and I knew I really was going to be a mama. I was so happy, but still tried to guard my emotions. I knew that we were still in the "danger zone" for miscarriage, but simply knowing that a beautiful little human being was growing inside of me,... well the joy of that miracle is inexplainable. The love that Jess and I both felt the minute we saw that little fluttering blob on the screen is stronger that any emotion we had ever experienced previous to that moment.

16 weeks

Everything went smoothly with the early pregnancy. I had almost no morning sickness, and few other symptoms. I did have spotting off and on throughout the first trimester. My doctor always said that it was within the normal boundaries, but I now wonder if it wasn't my body recognizing that there was something drastically wrong. When everything looked good at our 12 week ultrasound any attempts at being careful and trying "not to get my hopes up" went out the window. I was having a baby, and I was in love!

18 weeks. It's a boy!

We had an elective gender ultrasound at 18 weeks, and found out that we were having a BOY! My husband was bursting with pride. They way he said: "I'm having a son!" made me so happy, it brought tears to my eyes. We named him Jude Allen, after Jess' dad, who passed away when Jess was in highschool. We researched, registered, and started buying cute little outfits, cloth diapers, baby carriers, a co-sleeper; I started crocheting hats, and working on nursery projects,... the works. Right at 18 weeks I also started feeling him move. It felt like he was doing kickboxing in there! The next three weeks were a gift; probably the happiest of my life. I was a carefree "glowing" pregnant lady planning all the little details of my child's life with hardly a concern in the world.

I had very little nervousness going into my 20 week anatomy scan (which we actually didn't have until 21 weeks). We were just excited for another chance to see our beautiful boy (it was on my birthday, happy birthday to me!). The tech started the ultrasound, and got quieter and quieter. She mentioned a few things like uneven measurements, he was measuring small, he didn't want to move so she couldn't get a good look at his organs. She seemed pretty serious, and we were worried, but our doctor said that it was likely just his own growth pattern. "Every baby grows a little different." She wanted us to go see a perinatologist though, just to be safe. She said it was probably nothing.

The perinatologist appointment was a week later. It was such a long week, but half-way through Jess was able to feel Jude move for the first (and only) time. We felt lke this was reassurance that everything was going to be ok. We went to that appointment expecting good news, but that's not how it worked. The ultrasound tech was fighting back tears as she left the room to go get the doctor. That's when I started to think it might really be serious. The doctor came in and started listing the abnormalities that he saw,.... it was a long list. That day he mentioned several different possible diagnoses (Trisomy 13 and 18 were at the top of the list), almost all of them fatal, and recommended that we have an amniocentesis. We had the amnio two days later, and got the results 2 days after that. November 19th, 2011 (my husband's birthday, happy birthday to him!): our Jude had Triploidy. A rare and fatal chromosomal anomaly where the baby has triples instead of doubles of every singe chromosome. A healthy baby has 46 chromosomes. A baby with Trisomy 13, 18, or the most well-known trisomy: 21 (Down Syndrome), has 47 chromosomes. Our baby Jude had 69. The doctors were amazed that he had survived this long, as most babies conceived with Triploidy are miscarried very early on. (At times we felt like their science experiement; because our situation was so rare.) It was unlikely that he would survive to term, and would almost certainly be born still. If by some miracle he was born with a heartbeat, then he would die almost immediately thereafter because his anomalies were so severe. Severe enough that no contientious doctor would even have tried to treat him because it would just be causing unecessary pain.

At this point I was about 23 weeks along, and we were encouraged to "terminate" (I HATE that word!) right away as this diagnosis can hold life threatening risks to the mother. Cancer, Pre-eclampsia, future infertility, and hemorrhaging to name a few. One practitioner I spoke to said that there was up to an 80% chance of pre-eclampsia if I tried to carry Jude to term. The way he was positioned inside me caused a high chance that if he kept growing to term he would be the only child Jess and I could ever have. The placenta also looked suspicious for a complication associated with Triploidy called a partial molar pregnancy which causes increasing risk of cancer the longer the placenta is attached. It was scary. But losing my baby was scarier. We couldn't fathom it. We sat at home stunned. We spent hours in each others arms sobbing and praying. It didn't seem right that the world just kept spinning, when our lives had come to a complete standstill. I could still feel him moving inside me, but he was slowing down, moving less and less. Sadly, when I did feel him, there was little joy; mostly fear of the day that the movement would stop. We had to make decisions, big decisions, but life was such a fog. The pain was so overwhelming. Through it all we felt God's presence so strongly and the love of our church family so keenly. This, the support of our families, and the prayers of an army are what kept us moving through those difficult days.

26 weeks

Several weeks later, after much prayer, fasting, and seeking wisdom from people we trust, we finally made the decision to induce. It was the hardest decision I've ever made in my life; but we feel as though God claimed Jude's life from the beginning. It was so hard to try and prioritize my life vs. his life. That's what the decision felt like. And the lives of our potential future children were also on the line. We believe that all life is sacred, and if there had been any glimmer of hope for Jude's survival I would have continued to carry him as long as my body would have allowed. Jess and I were willing to take that risk, but given the absolute hopelessness of Jude's condition we felt that taking that risk was foolish. God gives life and he takes it away. He claimed Jude's life from the beginning, and in the end we felt as though we had the freedom to release Jude's life to God sooner rather that later in order to preserve my life and the lives of our future children. God has provided us with the means to have great medical knowledge, and we felt that the wise decision was to take this medical knowledge into consideration. We believe in miracles, and we prayed for one up until the moment Jude was born. We felt that we had received God's answer to our prayers. Jesus wanted Jude in Heaven, and we were at peace with our decision to allow him to go. But oh, it hurt.

We went in at 8:00am on 12/20/2011. (I was 27weeks pregnant; a survivable age for an otherwise healthy baby to be born.) I was given an obscene dose (16x higher than for a normal induction) of meds to kick my body into labor. Right after the second dose, early that afternoon, we had the nurse check for Jude's heartbeat. That was the last time we heard that precious sound. His tiny heart may have only had two chambers, but it made the most beautiful noise I've ever heard. It took a while, and several more dosages. All that day and night we waited. I did have an epidural; though I always wanted a natural labor. I had even wanted to use a natural birth center with midwives at the beginning of the pregnancy. But with so much emotional pain and anguish, I just didn't feel it necessary to put myself throuh the physical pain as well. And to what gain would it have been? Now, I'm very glad that I did have the epidural. It worked like a dream. I still couldn't sleep that night because I was so anxious, but at least I didn't feel the physical pain.

Our little family

Finally, at 6:35 am on December 21st, Jude Allen was born. He had already gone to Jesus. The room was silent. No apgars stated, no infant's cry, no "congratulations mommy!" I had just given birth to my son. My firstborn. And I wanted to feel the joy that should be attatched to that event; but there he was: tiny, blue, broken, breathless... and yet still beautiful. He weighed in at just under a pound; 14.8 ounces, and was 12 inces long. His little form was clearly not made for this world; merely a vessel for his beautiful soul. Even still, we could see bits and pieces of ourselves in him. He had my chin, Jess' eyebrows, and the cutest little button nose and rosebud lips you've ever seen. I could tell that if he had lived he would have had an epic pouty face, and would probably have gotten his way far too often.

With his grandparents

Thanks to the help of several fantastic organizations we were prepared with tiny clothes and craft supplies for making as many memories as possible in the short time we had with him. (I have a separate resource page on my blog for more info on the organizations that helped us prepare for Jude's birth: here ) My parents, and Jess' mom were all there so Jude's grandmas both helped give him his first bath. They dressed him, Jess and I read him several books we had brought, my dad (who is a pastor) dedicated him to the Lord and read several beautiful Bible passages (also listed on the resource page are these verses, as well as many more that have been special through this whole experience.), we had a photographer take family pictures, and got footprints on everything we could think of.

His itty-bitty hand

We spent most of that day with him; trying to give him a lifetime of love in a few short hours. He was so fragile, that it was difficult. I wanted to kiss him all over, and examine every little piece of him; but we mostly kept him swaddled in the beautiful blanket my mom had crocheted for him. I was afraid I would break him even more. I regret these inhibitions now, but at least we got the time with him that we did. At least we loved him the best we knew how in the limited life that we were honored to share with him.

The funeral home came for him late that afternoon. Kissing him goodbye, and handing my baby to a complete stranger was the hardest thing I've ever done. I knew I'd never see him again. I wanted to give him just one more kiss, tell him one more time that I loved him; but I knew I would never be ready to say that final goodbye. The funeral director put him in a little box with a lid to carry him out. I hated that. He was my baby, and he didn't belong in a box, but I understood that they couldn't just carry him out of the room in view of other laboring and new moms, that wouldn't be "appropriate". So, into the box he went, and then he was gone. We were able to check out of the hospital that night and go home. Walking off the OB floor carrying flowers and footprints instead of a baby felt so lonely; but we were immensely blessed to have each other and our family around us for the days and weeks following Jude's birth.

I know that I will meet him again someday in Heaven, but it's hard to wait. I miss him so much. It's still a marvel to me that I could love that tiny person with such passion. I never really knew him after all, but I loved him more than life itself. And while each day brings us farther and farther from that awful goodbye, it also brings us closer and closer to a glorious "Hello!" This is what I choose to focus on.

Our ongoing prayer is that Jude's story isn't over. It isn't for us, and it never will be. God has used Jude's short life to change us. We have a different perspective on life, relationships, the love of our Savior, and eternity, all because of Jude. We have been told by many that this is true for them as well. I feel that as long as God is using Jude's story to grow people and bring them closer to Himself then his story isn't over. God is still writing it, and I look forward to seeing it unfold.

Isaiah 61:3
To all who mourn in Israel,
he will give a crown of beauty for ashes,
a joyous blessing instead of mourning,

festive praise instead of despair.
In their righteousness, they will be like great oaks
that the Lord has planted for his own glory.

Still I choose to say, Lord, blessed be your name.