Prenatal Life Limiting Diagnosis & Carrying to Term | Q&A with Cari Wilhite
I am honored to share an interview with Cari Wilhite about receiving a prenatal life-limiting diagnosis for her son Graham. You can get to know Cari a little more and follow along as she navigates life after loss over on instagram: @grateful4graham.
Cari, thank you for sharing your story with us. We are so grateful.
If you or someone you know has received a life-limiting or terminal diagnosis for your baby, please check out this resource page with information and helpful resources for navigating this season.
Hi Cari, tell us about yourself.
My name is Cari, and I am a wife and mother. I have been married to my husband for 7 years, and we have 3 children; 2 living, and one angel in heaven. I am a stay-at-home mom during the day, and I teach English to students in China in the early mornings before my kids wake up. I enjoy watching movies, organizing, and crafting.
Tell us about your diagnosis.
My husband and I went to our son's routine anatomy and growth scan at 20 weeks, and had no concerns going into the appointment. The ultrasound technician greeted us warmly and was genuinely excited to begin the sonogram. I am a natural worrier to begin with so any time we have an appointment my worry is there will not be a heartbeat. Once they found his heartbeat, my heart calmed.
Having had two previous children, I thought the images looked blurry and not as clear as I remember. I chalked it up to it being a new doctor's office and they had different machines. However, a few minutes later the technician's face was stoic, and they were not as talkative as before. I knew something was not right, but I tried to talk myself out of the negative thinking and not get ahead of the moment. A few minutes later, she excused herself to get the doctor. I tried my hardest to hold back tears, but I couldn't. The doctor came in and told us they could not see any fluid around the baby, and that they would be referring us to a maternal fetal medicine doctor for a more in-depth sonogram.
We were lucky enough to get an appointment the next day, which was great but also alarming that they would fit us in so soon. The next day we drove to the hospital and had a much more comprehensive sonogram performed. Ultimately, the doctors there could also not see fluid around our son. They explained that often no fluid means one of two things; either your water broke (which they tested, and it came back negative) or the baby is having problems making fluid due to a lack of kidneys, which they also couldn't find during the sonogram. I wasn't too worried, because you hear about people receiving kidney transplants all the time, so I figured this would be the solution.
The doctor explained that without kidneys, there is no fluid, and without fluid the baby is unable to practice breathing and swallowing which leads to severely underdeveloped lungs which by the time the baby was full term would be unable to sustain life. We asked how this would play out, and the doctor sadly said that if our baby made it to full term, which was unlikely and not guaranteed, he had less than a 1% chance of survival.
Tell us about the options you were given and your decision to carry to term.
After we found out the odds of survival, the doctor explained our options but made sure we knew that he did not want to influence our choice. He explained that we could immediately induce labor knowing that the outcome would not change the further we were in pregnancy, we could induce labor at a certain point in the pregnancy, or we could let my body naturally go into labor.
My husband and I didn't need to have a formal discussion since we both knew that we could never terminate our son simply because he has a terminal diagnosis. If one of us was diagnosed with a terminal illness, we would enjoy the time we had left and make the most of each moment, and we wanted to do the same for our baby. I also never wanted to regret my choice later down the road.
It was painful to know that I would spend another 4.5 months carrying a child that I may only get to spend a few hours with if we were lucky, but I also knew that the pain would not go away if we did induce labor prematurely. It would simply morph into a different type of pain...grief. If pain and grief were inevitable, we wanted to spend as much time and make the most memories as we could with our sweet boy.
We were only blessed with a little over an hour with our son, and I would do it all over again. It was hard at times knowing how our story would end on this side of heaven, but so so worth it.
How did you prepare for your baby's birth?
It is hard to say that there are any 'blessings' in this type of scenario, but if I had to list one it would be that we had so much time to plan every little thing that we wanted to do with our baby during his short life here on earth.
We were able to have an outfit made out my wedding dress, blankets made for him and for us to keep, a stuffed animal with his heartbeat recorded inside. So many people offered their services to help us preserve memories.
We were able to contact the organization, Now I Lay Me Down To Sleep, to come and take photographs before, during, and after delivery.
We also met with nurse coordinator who helped us plan our stay at the hospital. We talked about what we would want to happen, what we didn't want to happen, and things we wanted to do ourselves. Those questions were hard to hear, and they were even more difficult to answer at times.
One thing we did choose to do, was to give our son his first bath ourselves, and it was such a blessing. It was the most sacred experience I have ever had, and I will cherish those moments for the rest of my life.
I also read books about families who also carried to term, and it helped prepare me for what to expect in the months leading up to our son's birth, how family and friends handled the situation, and also included a few birth plans, which helped shape our own plan because it showed me different choices we had.
Facebook groups of moms’ who also had babies with the same diagnosis were a huge help. I could ask questions freely and have a wealth of knowledge to draw from.
Is there anything you wish you had done differently or known to do/expect?
I felt like I spent a good portion of the pregnancy planning to meet our son. It was an outlet for me and allowed me to feel like I was physically doing something for our son. As prepared as I was for the birth and meeting our son, I wish I would have also spent time preparing for grief.
I had essentially begun the grieving process in that 20-week anatomy scan, but it felt like it was an event that I would perpetually be anticipating instead of something that would actually happen. I knew grief would come eventually, but I wish I was more acquainted with what it looked like, and how differently people can grieve.
I am not very far removed from my son's birth, however, I have begun to listen to podcasts regarding grief and it has helped to know that the majority of my feelings or normal and that it is okay to not be okay some days.
Tell Us About Your Baby's Birthday.
We chose to schedule a (repeat) c-section at 37 weeks for a variety of reasons. After talking with our doctor, the chances were very high that our son would be born still if we chose to let my body go into labor naturally since there was no fluid to act as padding the cord could easily be compromised. For the same reason, inducing for natural delivery would be risky. Since I had had a previous c-section, my doctor recommended to have it again because it was not only fast but would also give us the best chances to meet our son alive.
The morning of his birthday, I had to fast starting at 4 o'clock in the morning. My husband must have been feeling extra supportive because he decided to fast with me. We had already chosen a name for our son, and his name would be Graham. Given this, before starting our fast, we woke up and had graham crackers and milk in his honor.
When we got to the hospital, we had the best nurses. Our nurse coordinator had picked her best ones to be with us during our stay. I couldn't have asked for better nurses. They were so sweet and made sure we had everything we needed. My parents had brought our other two children up to see us before we went back for surgery. It was nice to spend those last few moments and to have our loved ones up there with us.
When it was time for us to go back, I had a huge knot in my stomach. I was essentially our son’s life support. As long as he was inside me, he was safe. I wrestled with the fact that once the epidural was administered it would be the last time, I felt my son move. The nurses and doctors were so sweet to calm me down and assure me that he would be here soon, and I could love on him, but I could feel they were sad too.
The surgery went very smoothly, and in fact I think we broke my doctor's record for his fastest c-section. He had made a promise to us that he would work as fast as he could to get us back to the recovery room to spend him with Graham. When he was finally hear, he let out a few faint cries. It was both relieving and heartbreaking. I was so happy that he was alive, but also heartbroken that I knew time was not on our side. He weighed 4 pounds 10 ounces, and absolutely perfect. He had straight light brown hair, and I never got to see him open his eyes, but I imagine they were equally as perfect. They brought him over and I couldn't take my eyes off him. I just kept telling myself that he was finally here. I gently stroked his face with my fingers as my husband held him near me. He made a few funny faces as if he was saying 'This is gross!' They had to do a few more suctions to make sure they got everything out. A few minutes later, I was able to do skin to skin with him. Everyone always told me that you couldn't do that with a c-section, but it IS possible, and I am so thankful. I continued to gently stroke his back and face. His skin was super soft, and he seemed to be enjoying it just as much as I was.
My parents and our other children came into the recovery room shortly after we arrived. My husband said a blessing over him, and we were all able to love on him, kiss him, and enjoy our time as a family in that small hospital room. As I mentioned earlier, we chose to give him a bath. It was such an incredible experience. I have never felt so much peace and it was much needed. We were able to memorize his tiny features, and gently wash him. If it weren't for pictures, I couldn't have told you who or what else was going on in that room. He was 100% my focus and it will forever be one of my most cherished moments.
We were able to have him with us for 36 hours. I have heard that some hospitals have a time limits as for how long you can keep your baby with you. I never felt rushed or pressured to say our goodbyes. We were lucky enough to know our postpartum nurse from church. It was such a comfort.
We knew that the time would come soon to say our goodbyes, and we didn't want someone to tell us that the time was now, so we chose to say our goodbyes while our friend was our nurse. She graciously offered to say a prayer, and we cried and kissed and hugged on him before she carried him out in her arms.
I am so grateful that she chose to carry him and treat him just like any other baby, instead of coldly rolling him out. I couldn't have asked for a better hospital stay for the circumstances we were given. Despite the pain and overwhelming sadness, it was remarkably peaceful as well. I was able to understand 'peace that passes understanding'. I am so grateful that we were able to spend a whole hour with him, and I would do it all over again even if it was just for a few minutes.
photo by Nikki Wynne via Now I Lay Me Down To Sleep
What encouragement would you give to another mom who has just received a similar diagnosis for her baby?
I hope other moms who have to walk this path know that even though it is very painful, it also has shown me the innate good in others, and they have offered much needed heavenly peace when I need it most. So many people have shown up and supported me, our family, and most importantly our sweet boy, Graham.
The amount of love that has been shown has been so much more than I could have ever expected. There are days that are hard, and I know that will continue for the rest of my life, but there is also so much support ready to walk alongside you if you let them.
Look for support groups, both in person and online. Many moms have sadly also been handed this trial in life, and I have been comforted by hearing their stories, learning what has helped them, as well as having a friend that truly understands where you are when so many can't.
I highly recommend reading books pertaining to carrying to term despite a fatal diagnosis. Many organizations (Carrying to Term, M.E.N.D., String of Pearls, OneWing, etc.) offer free resources and also send care packages with items to remember you baby with as well as things to make mementos (hand and feet molds, ornaments for hand/footprints), books for both yourself and to read to your baby
What encouragement/advice would you give to someone who loves a mom who has just received a similar diagnosis for her baby?
For Mother's Day, I received a necklace with all of my children's initials on it and a ring with Graham's name on it. We brought these items to the hospital with us and took pictures of him with these items of jewelry. I wear them every day, and I love seeing his name on them.
Shortly before Graham was born, my friends organized a baby shower for me. It was wonderful to be surrounded by friends who loved both Graham and me. We went out to dinner, and they had gifted me items to pamper myself with, as well as donations to help with hospital and funeral costs. It meant so much to me that they wanted to celebrate our baby despite what the future held.
Several people from church offered their talents. One sweet lady made a burial gown out of my wedding dress. Others made blankets, ornaments, sent artwork of Jesus with an infant to hang around our home.
After Graham was born, and we returned home from the hospital, friends created both a GoFundMe page to help with hospital and funeral costs. I was shocked at how expensive everything is. (I have also learned that many funeral homes offer discounted services for infants, so be sure to ask!) Another friend started a Meal Train so we did not have to worry about food.
Every single act of service was such a blessing. The only task we had to consider was how to keep Graham forefront in our minds. Seemingly every other detail was taken care of by ministering angels.
