Family carrying terminally ill baby to term speaks out
I Carried My Terminally Ill Baby So She Could Save Others
We almost didn't get the news. At 19-weeks pregnant with our third child, I went with my husband, Robert, to Oklahoma University Hospital for an anatomy scan. It's a very busy prenatal facility, and the sign in the waiting room kept changing: 10 minutes behind, then 20. After an hour, we talked about leaving. We weren't going to find out the gender, this pregnancy had been easy and our other babies were both completely healthy, so the whole scan felt like a waste of time. Just as we were about to go home, they called our names.
As the technician did the scan, Robert and I admired the little fingers and toes and tried not to cheat and find out the gender. When she was taking measurements of the baby's head, though, she stopped making small talk and focused on the assessment. She excused herself to show the images to a physician. I didn't really feel like anything was wrong; I just figured this was a more in-depth ultrasound because I had preeclampsia (high blood pressure) during my last pregnancy.
The doctor came in and wanted to perform his own quick scan. His assessment confirmed what she had seen. He turned the machine off, looked at us and said, "What I have to tell you isn't easy. Your baby has anencephaly."
It's a pretty straightforward diagnosis; you can see the absence of the top of the baby's head. He walked us through what it meant. The words "incompatible with life" just sucked the air right out of my lungs. I knew what he was saying, but I couldn't really apply it to us or to our baby.
On instinct, I had the doctor tell us if it was a boy or girl because we knew our time was limited and we wanted every moment to count. They told us she was a girl, then gave us a moment to process.
Naming our two older girls had been a struggle. But right then, we named her easily: Annie, which means, "grace." We knew she had a purpose — even though she was not made for this world.
Our Girl's Purpose
Right out of high school, I joined the Oklahoma Air National Guard. On a C130 to my second deployment overseas, Robert was sitting across the aisle. It's very loud and you have to wear hearing protection. We're both very shy, so we just awkwardly looked at each other for three days. But we were deployed together in Uzbekistan, and we married in March 2008.
A couple months later, we found out I was pregnant with Dylan. Her pregnancy was normal, other than the fact that we were unprepared and flying by the seat of our pants!
With our second daughter, Harper, everything was fine until 32 weeks. My blood pressure started climbing; I had severe preeclampsia. She was delivered at 33 weeks, at 3 pounds and 11 ounces. She spent a month in the NICU. We managed the best we could, but it was awful.
When we found out I was pregnant again, we were thrilled. But after the news of Annie's diagnosis, we went to my OB to discuss our options. Late-term abortion is the option most women in my position (around 95%) choose, but we decided against it. I am fortunate enough to have an incredibly selfless and supportive husband, a faith that kept me going when I wanted to fall apart, and two healthy and vibrant daughters to hug when I couldn't stop sobbing. I was also fortunate that doctors also told us Annie was unlikely to be in any pain.
From the first moment, we hoped for a live birth and planned a C-section. We wanted a few precious memories with our girl. No one tried to change our minds, but whenever I told certain family members and friends, they asked, "Are you sure this is what you want to do?" I could tell by the looks on their faces they thought it might have been irresponsible or wondered why we didn't just get it over with and terminate the pregnancy. Even my own sisters both told me later that they thought we were crazy for wanting to carry to term.
At that first appointment, I asked our doctor, "What about donating her organs?" Annie seemed like an ideal donor: She was perfectly healthy other than her brain. The doctor looked at me, a little puzzled, and said, "I don't know how to go about that. Let me ask around and get back to you." An infant organ donation had never been done before in Oklahoma.
From that point on, we had at least one meeting at the hospital every month. Each time, the room got fuller: hospital liaisons, neonatologists, chaplains, the ethics committee and people from the NICU. They wanted to be extremely prepared because there is always such a small window for organ donation, but in our case in particular.
Whenever I got emotional, we would take breaks. The lead doctor, Dr. Raja Nandyal, had a plan so that Annie wouldn't just be in a bed on an incubator and we could hold her in our arms. To make donation possible, they had to keep her oxygen levels up, but he knew nothing was worth stealing our time with Annie. I'm forever grateful for that. We worked diligently with the team at , all of whom put in a ton of time and hard work for a common goal: I wanted Annie's life to ultimately give life to other children.
Planning for Annie
Every time a stranger asked when I was due and if I knew if I was having a boy or girl, I died a little more inside. "Three girls? Dad better have a shotgun ready!" would set me spiraling internally, but I usually just agreed. They were normal comments that would have been welcome if my baby were healthy, but it felt like I lied every time I smiled and didn't tell them Annie's story.
We didn't know how long Annie would survive, but our time would certainly be short. I tried to plan for every possible scenario. One of my big fears was that I'd be at the hospital and her time would be slipping away, and I wouldn't have what I needed for special moments, like the hat and booties I knitted for her pictures or a gift for her sisters.
A huge stress for me was picking out an outfit for Annie. I knew it would likely be the only outfit she would ever wear. Every time I tried to find something, I would get stressed out at the store, crying and standing in the baby section. I couldn't do it.
One day, our marriage counselor called and said she had something for me. She didn't want me to be offended, but she felt like she had to do it. Robert and I opened her package: a perfect little white dress. To me, that dress is so much more than a dress.
We packed a special box for Annie with her dress, hat and booties. Our daughter Dylan mentioned wanting to bring her bookHeaven Is for Realto read it to Annie, so we brought that too. We bought each of the girls a cross necklace from Annie so they would have a gift as well. My sisters and I finished a yellow, gray and white quilt that my late grandmother started so it could be on the hospital bed with us. We wanted it to be as cheery and as cozy as a hospital room could be.
Harper was two then, so she didn't understand much of what was going on. All I could do was prepare her for Annie's physical appearance. (Because parts of her skull and brain didn't develop, we knew she wouldn't look like most babies.) There wasn't much I could say other than, "God makes us all different, and everybody's beautiful, and Annie is going to be so beautiful."
Robert and I decided to give Dylan, who was four, the opportunity to ask the hard questions, to process it while we weren't drowning in grief after Annie was born. We sat her down and we told her that Annie's head was broken and because of that, she wouldn't be able to stay with us. She was going to go to heaven to stay with Jesus. I will never forget, her eyes were so bright, and she said, "Mom, that's so great. He's going to protect her."
The Best Day of My Life
At five in the morning on June 26, 2013, the chaplain and the grief counselors met us in the chapel. The chaplain prayed over my family and Robert's, but I still felt fear. I kept thinking,This isn't happening, I can't do this.
When we got upstairs and walked into the obstetric intensive care room, I had such a sense of peace. Huge windows filled the room with light. It was small and cozy.
Sarah, a photographer, had offered to come to the hospital that day. I knew that her photos were going to be the only photos I'd have of my three girls together. My older sister also came, and our plan was for her to come into the operating room if Robert had to leave and be with Annie. We were talking and laughing. We told stories. No one was sad.
Instead of waiting until the surgery was under way, Robert was able to be with me the whole time. He is a man of very few words, but he has a very comforting presence. It was a calm moment for us. If he wasn't looking at me, he had his forehead on mine and he was praying.
I honestly didn't know Annie had been born until I heard a commotion over by the warmer. Then I heard Sarah's camera clicking like crazy. She had the mask on and her eyes were full of tears, but she was smiling. I knew Annie was here. She didn't cry much, but I heard her making noise. They showed her to me, and she was so beautiful.
When she arrived, she was doing well, chubby and pink. Robert went with her, and I could tell he wanted to be in two places at once. My sister Jenny came in, and I told Jenny how beautiful Annie was. We were just so happy she was born alive and we were going to get time with our baby girl. It was wonderful.
When they finished stitching me up, they rolled me into the room where they were working on Annie. Then, they put her in my arms.
That moment, I felt lighter than I'd felt in five months. I remember holding her hands and pressing my face on hers and smelling her. I couldn't kiss her enough. When I was pregnant, I was worried that everyone would be there and I wouldn't want to share her and I'd feel guilty. But what happened was that I just was so proud of our girl. She wasn't mine to keep.
We let our parents come back first. Everyone was very respectful and knew that I needed the time to hold her. They admired her while I held her, and then our siblings got to come back. It was nice to do it in shifts because it wasn't overwhelming, but peaceful. No one was sad. That's the thing I couldn't believe. We were all just so happy.
I'll never forget when our girls all met. Harper was being a little stubborn and squirmy, so she waited with her grandparents while Dylan came into the room and climbed up next to me. I was worried that she might be concerned by Annie's appearance, but she just had the most loving look on her face. She held Annie's hand happily.
At one point Dylan looked at me and she said, "Mom, I want to kiss her and I don't know where I can." I rearranged Annie's oxygen tube so she could reach her cheek and give her a kiss.
Later, we read herHeaven is for Realbook. That was one of the best moments of my life. I don't know how I got through that book without crying. Dylan even got onto me because I wasn't showing Annie the pictures the right way. I think Dylan was genuinely concerned that Annie would be scared to go to Heaven because she didn't know about it. It was the most beautiful thing, just two sisters listening to a story.
When Harper finally came in, I was really concerned because if she doesn't want to do something, she's not going to do it. We weren't going to get a second chance for her to meet her little sister, but she was so in love.
Harper was caring and gentle, a side of my daughter I'd never seen before. Then she accidentally poked Annie in the eye, which was kind of funny. That was what I needed — something so normal.
Robert also experienced the joy of the day, but he is a doer. I could see it in his brow. He was concerned and wanted to fix it, to take care of me and take care of Annie. He got to hold her hand while they got her tubes and lines situated. He got to change her diaper. Those acts of service for Annie were comforting to him.
After the necessary testing for organ donation had been done, they took her off her oxygen to see what would happen and not delay her life and death process. Her oxygen level dropped shortly afterward, around 2 p.m., and she started to turn purple and her heart rate monitor went wacky. We thought she was going. I told Annie it was okay, she could go, and I loved her. But I was lying — I wasn't ready. Miraculously, she stabilized. Time slowed down.
It was late into the evening, 11 p.m. or so. Family had been filtering in and out, then they gave us some time to be alone, just Annie, Robert and I. I held her for a long time and was fighting sleep because I didn't want to lose a minute with her. The nurse brought me soup, so Robert was sitting next to me on the bed and holding her. I heard Annie gasp.
I looked at her and knew it was time. Robert was so wonderful because she was both of ours, but he let me hold Annie. She gasped again, and we called the nurse. I was panicking and wanted the nurse to fix it. "Something is happening. She's not breathing!" I cried. The nurse folded her hands and looked at us with a beautifully calm expression and asked if we wanted her to get our family. It reminded me that we had prepared for this. Annie got to be with us all day, and she was ready. Her response shaped the way I view my daughter's death. It was not panicked, it was not stressful, it was beautiful.
Our family came in quietly and surrounded us while I held Annie. She gasped every so often and I was telling her, honestly this time, that it was okay to go and I loved her. I thanked her for being with us, and I thanked God for giving her to us, and then we saw her leave.
I'm so grateful for that. If she had to die, I'm so glad it was in my arms. She lived a beautiful and incredible 14 hours and 58 minutes. She spent her entire life surrounded by love, joy and peace. There was no sorrow, even when she passed away.
Because her oxygen levels were too low for too long, her organs weren't viable for transplant, which was disappointing. At the same time, there wasn't any hurry to rush her off to surgery. We got to take as much time as we needed.
Our family left, and Robert and I unwrapped her blankets and admired every inch of her. I laid her on my chest, stroked her back. It was a peaceful time.
When it was time to go into surgery, they put me in a wheelchair and I held Annie close, pressing my face against hers. If I kissed her soft cheek a million times it still wouldn't have been enough. Our nurse, Shellie, was waiting by the operating room so I wasn't handing her to a stranger.
They were able to donate her heart valves for recipients and many of her organs for research purposes. Honestly, it took me a while to come to terms with that. I guess I wanted the closure of knowing her kidneys went to this person who's alive. But there's no way I'll ever know all the people who have been impacted by her story. I will never know the number of lives she was able to save — because not only were her organs donated, but the protocol was also put in place for other infants to donate their organs. Once I started thinking that way, I had peace.
Waves of Grief
The first six months after Annie's death, it felt normal to be sad all the time. Up to that point, I had never lost someone out of order. The hardest part is that people don't know what to do. It felt like no one ever mentioned her to us. It was a lonely journey to figure out that people did care, they just didn't know what to say.
Robert and I knew we wanted a large family so that was part of the process of healing, too. Our doctor told us we could try after six months. We have been fairly lucky, and I got pregnant really quickly with our fourth daughter, Iva. Coping with my grief as well as being pregnant and emotional was very complicated.
One of the biggest gifts Robert has ever given me was the ability to be still during that time. I had graduated nursing school six weeks before Annie was born and my goal was to take my state-licensing exam by August. But my mind was in a fog, and things kept pushing back my exam. He let me spend time with our girls and not feel the pressure to take the test and get a job. If I hadn't healed in the proper way for me, I would be a hot mess right now.
From the very beginning, I think I've been deluded about grief. I thought once she died, I would actually grieve and be able to move on. And then maybe after her funeral, I thought it would end. But the grief and pain kept welling up in me. I thought after the holidays, or after Annie's birthday, or after Iva was born, that would be the end to my grief. I think it's human nature to want things to be clean and tidy, but that's not real life. You have to trudge through the mess to get to the other side.
On Annie's first birthday, we had our first ultrasound of Iva. I was really nervous, but we were able to see a beautiful, healthy baby on Annie's birthday, which was an amazing gift. Iva was born a year and a few months after Annie.
Right after Annie's second birthday, we moved so my husband could start pilot training. Robert had always been a big presence at home, and now he was gone most of the time. I was alone a lot and alone with the girls. I became really depressed, and that's when I finally went to grief counseling. I realized that I worried too much about what people thought and was trying to fit some mold of what grief was supposed to look like.
My husband's grieving has been radically different, which is something else I had to realize was okay. Losing Annie and other times we've struggled have made us stronger. Instead of pulling away from each other, we ran toward each other.
With our kids, I tend to appreciate the little things more. Today, Dylan is an incredibly smart 7-year-old. She asks way more questions than I'm capable of answering in a day, and is wise beyond her years. Harper is five. She's very quiet but she's always deep in thought, lost in her own imagination. Iva recently turned two and is the most precious little toddler. She melts me with her pigtails and her giggles. They are all such a source of deep joy.
So many times in the wake of Annie's death, people said to me that they wanted the old Abbey back. Or I would be out with friends or family for a kid-free evening, and I would be laughing and someone would comment, "It's good to have the old Abbey back."
I think people had good intentions by saying this, but it is based on the assumption that grief is neat, tidy and linear. The old Abbey is gone. When Annie left, she took a piece of me. She forever changed me, and I thank God for that.
I hate the thought that the "new me" may make people sad or uncomfortable, but I have come to embrace and love the new me.The new me has the ability to empathize where the old me was quick to judge. The new me tells anyone who will listen about my incredible daughter and her brief life. The new me has connections to countless other women who have suffered loss and is no longer terrified of vulnerability. The new me has a far deeper relationship with God, because I walked through a time where I couldn't function without faith. I wish people knew that I will never, ever be the same — and that's a good thing.
Annie's story is one of hope. I think it shows people that in the midst of tragedy, there can be beauty. Annie was not ours to keep — her story was meant to be shared, and I intend to do so until the day I die.
Video: I Carried My Terminally Ill Baby So She Could Save Others
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