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Joy, Baby with anencephaly

I joined my husband, Ryan, in moving across the country to our first duty station in Hawaii on July 5th, 2014. We had been married for 1.5 years now and were ready to start trying for a baby. After just 7 weeks, I got a plus sign on all 3 pregnancy tests I took. Ryan was training in the field, so I was frantically snapping a picture and sending it in a text while crying and dancing in our new, empty apartment. He was just as ecstatic as I. I sent my sister the text, and my parents, and my mother-in-law. I was a mommy! Right then and there.

Fast forward after the blood test confirmation, announcing on Facebook and first appointment (paperwork); my parents, sister and nephew flew to Hawaii from our home in Southwest Virginia and got to go to my 12 week appointment with us during their visit.

If you're unfamiliar with military hospitals, you only get 1 ultrasound at 20 weeks because, frankly, there are A LOT of pregnant military wives and it's not really possible to do more. We were all content with just getting to FINALLY hear a heartbeat.

170 beats per minute. I smiled ear to ear and Ryan squeezed my hand listening to the gallop of that perfect heartbeat.

The doctor scheduled a dating ultrasound due to the fact that I didn't know when my last period was because I have never had a regular cycle and we'd see our baby on Halloween day!

I'd made it through the first trimester and I thought I was in the clear to start buying things online (nursing pillow, nursing cover, a carrier with matching leggings because I just KNEW she was a girl, etc.). I started imagining the outfits I would have her wear and how I'd do her hair, who she'd look like, how our dog, Tyson, would be with her, if I was going to cloth diaper and which breast pump I would buy.

Everything was perfect.

It always had been.

I always got great grades and graduated with a Bachelor's in Nursing. I was talented in gymnastics, drawing and cheer. I was good with kids and I was pretty. Ryan was amazing at every sport he did. He was so smart and so handsome. He was a former youth leader and loved kids. He had just joined the army and was a great soldier. We attended church on a regular basis. We were kind and fit and financially stable. Our parents were still married after 20+ years as well as our grandparents and we had amazing friends who loved God as much as we did. Nothing was going to happen.

Everything was perfect... until it wasn't.

October 31st, (aka Knowing Day) we went into the ultrasound room giddy to see our growing baby. The ultrasound tech put the warm gel on my belly and we saw our baby kicking! She looked... and looked... and looked. She tilted the bed back because we couldn't get a good picture of her head. Still couldn't. She did a transvaginal ultrasound to get a closer view and called the doctor in. With no hesitation, Dr. H. said "you're baby has a neural tube defect called Acrania/Anencephaly".

She went on to explain what it meant, but I didn't listen to her. I knew those words... I'd studied them in nursing school. I'd seen the graphic pictures in my textbooks. I knew... but Ryan didn't.

She told us our baby wouldn't survive and said she would leave us alone for a few minutes to gather ourselves.

Ryan stood in front of me and held both my hands and I asked him to pray. I don't remember the words he said, but I felt a lot better hearing him talking to God. As I choked back tears, Dr. H. reentered the room and told us our options.

Terminate the pregnancy or carry our baby.

Without even looking at each other, we both said "we'd never terminate".

From that moment on Dr. H. never asked again about our decision to carry to term and encouraged questions. We were to be seen every 2 or 3 weeks from then on because, in the words of Dr. H., "this is an extra way to bond with your baby". I wish I'd thanked her for not pressuring us to terminate because, unfortunately, many doctors do.

We called our families and I updated my status on Facebook stating our devastating news. No one could believe this was happening to us and honestly, we didn't either.

The next week we had an appointment for any questions that we had and found our that I was right and she was a GIRL!

I'm a researcher, so I had written down tons of questions (I had a list of questions for every appointment we had after that, as well). I asked things like "can we donate her organs or my breastmilk?", "will I make it to full term?", and "how soon can I write out a birth plan?". Ryan had questions too. He asked things like "could anything happen to Tiffany?", "was this anything we did?", and "how can we prevent this in future pregnancies?".

Joy, Baby with anencephaly

When we got in the car, I asked if we could name her Joy because she'd made us so happy and he agreed.

I often pray that God uses us as a light for others to get to know Him or know Him better. We were never once angry with God, but we were confused and upset as to why His plan for us was so heartbreaking and didn't understand why He was going to take our daughter. We quickly realized that He wanted us to show people how to praise Him in the storms of life and that's exactly what we were going to do. People often say "God doesn't give you something you can't handle", but I can assure you that we couldn't handle this. We had to let Him handle it for us.

I made her a page on Facebook called Prayers for Joy Hubb (which is now Joy in the Journey). I posted weekly updates with any new information we found out, pictures of my bump (even though I never even got a big belly, haha), requests for prayers for us to have strength and understanding, to raise awareness for Anencephaly and for us to share the word of God through our journey with Joy. The outpouring of love was overwhelming. There were countless messages and comments from people who have gone through a loss of a child (some even to Anencephaly) and I mourned with each of them.

I had a normal pregnancy (minus the neural tube defect). Morning sickness, cravings, back pain, braxton hicks contractions, heartburn, super painful rib kicks/being kept up all night by kicks, being constantly hungry but only being able to eat a little because there was no more room.

But on Wednesday night, February 18th, I started having real contractions. I was only 31 weeks, so I didn't think they were real at the time and I attributed it to the workout we'd done the night before. The next day, they were a bit worse, so I took it easy all day with Tyson laying right beside me. By the time Ryan got home from work, they started getting closer and he had me call the nurse line to see if they thought I should come in. Ryan showered while I talked to the nurse and we ate some wings before the 30 minute drive to the hospital.

I walked to Labor and Delivery holding Ryan's hand. They had me hooked up fairly quickly and I was laughing with the nurse so she didn't believe I was really in pain. She soon noticed that they were very close contractions on the monitor and had the doctor come check to see if I was dilated. Sure enough, I was a 5 cm with a bulging bag of water. I began to cry and whispered to Ryan that I was scared. As they prepped my room and I handed them my poor excuse for a birth plan (it was a rough draft that I had stuck in my wallet to take to our next appointment to be looked over), Ryan called our families even though it was 4 am back in Virginia. When I got to my room, my water broke not 30 minutes later.

The nurse stayed with Ryan and I the whole time and even prayed with us. I don't remember her name or even what she looked like, but I can tell you she was a blessing. She helped coach Ryan on how to coach me through the epidural free birth I wanted and encouraged me the whole time.

After only 3.5 hours, I'd progressed to 10cm and could start pushing. I only had to push for about 5 minutes until Joy came. She had kicked me up until the last push and I knew she was gone.

On February 20, 2015, 4:25 am, our Joy was born sleeping. Ryan held her, then me. She was beautiful, silent, and so tiny, but tall.

She got her bath, weighed, and measured. 2lbs 2.5 ounces and 13.5 inches long. She had green eyes like me, dark hair at the nape of her neck, and Ryan's feet. We held her, held each other, smiled, cried, prayed, and I sang to her.

Joy, Baby with anencephaly

The photographer from Now I Lay Me Down to Sleep came to take pictures for us. We dressed her in a cheetah print dress my mom bought her when I was only 9 weeks. He did a beautiful job at capturing this short time we had with Joy and the memories from that day.

After 7 hours of Ryan and I passing her back and forth because we just couldn't put her down, I noticed her already bruised skin was turning darker and decided to let them take her. Ryan held me as I cried and I had never felt closer to him than I did in that moment.

We were released from the hospital later that morning after we met with the bereavement counselor, the lactation consultant and the doctor. Leaving the hospital with empty arms was the hardest thing I ever did.. I thought.

We decided to take her body back to Virginia to be buried back home so we flew out a few days later. Her funeral was beautiful. We had an open casket viewing for family and a closed casket during the services which were done by one of our best friends and pastor. He told the story of David & Bathsheba losing their son to an illness and how David chose to praise Him through his storm. We had a balloon release after her burial with green and pink balloons. I was numb that day. I don't remember crying at all until I laid down to go to sleep that night. I've never hurt as much as I did kissing her goodbye.

The following months, I pumped the breast-milk she gave me. At first, it broke my heart knowing she'd given me this milk and that she wouldn't be the one getting it. I donated my first few ounces to a grateful mom and baby and it fuelled my desire to pump as much as possible. I set a goal of 5000 oz and met it just short of 4 months. In those 4 months, Joy's legacy milk nourished 15 local babies and many babies from the milk bank that I donated to in California.

Her 1/2 birthday is today, August 20th. I can't believe that time has kept going without her here. I still have hard days a lot, but I have an overwhelming peace that I can't put into words. A friend of mine on the anencephaly support group said something along the lines of, "it's our job as parents to bring our children up to know the Lord and our babies have already met Him" and I know that is why I have such a peace that only God can give.

Joy made us parents. She will always be our first baby. Our future children will know of their big sister and the huge impact she had on the world in the short time she was here. We will always speak of her and share our Joy with the world. We will always spread awareness for Anencephaly.

Joy's mommy, Tiffany


Reach out to Tiffany through her blog.


Tiffany and Ryan had two healthy sons after Joy



Last updated April 8, 2019