​At 38 weeks pregnant, my husband, Joel and I heard the words every expecting parent fears, there is no heartbeat. The shock and terror of that moment is truly indescribable. I have never felt so scared in my life. There we were looking at our baby girl, Helen James , on an ultrasound machine. We could see her, but the heartbeat and life that had been so vivid for 38 weeks was gone. In the blink of an eye, Joel and I had lost our daughter.

Helen was a very active baby and moved constantly. On June 4 when she didn’t move after dinner, I knew something was seriously wrong.. We called my OB group who advised us to come to the hospital. I delivered Helen via C-section during the early morning hours on June 5 at Saint Thomas Midtown Hospital in Nashville. From the surgery to the aftermath, the nurses and doctors were simply amazing. I will never forget them telling us that we had a beautiful baby girl. The cause of Helen’s death was never determined. There were no visible signs of issues with the umbilical cord or placenta during the C-section. We chose to have an autopsy, but that also did not provide any answers. I’m not sure that a concrete cause would have provided us the closure we needed, but we knew we had to try to find out what happened.

Following the C-section, there was mention that Helen could be in our hospital room with us. Joel and I could not comprehend what the nurses were saying. The shock, lack of sleep and pain medication numbed my senses to the full magnitude of what was happening around us. But then a nurse brought Helen to our room around 6 a.m. and said that she could stay with us as long as we wanted her there.
The hours went by, and we did not want to let her go, so the staff set up something they referred to as a cooling blanket, which was set up in a crib and was so discreet you would never have never known it was there. This Cuddle Cot became a lifeline to our daughter. Over the course of three days, our family and friends traveled from all over the country and as far as Panama where my sister lives to come and meet Helen James. Our hospital room was filled with emotions – tears and sadness and heartbreak, but there were also moments of laughter and love. While the experience was beyond painful, it was also one filled with hope.

The Cuddle Cot gave our family and friends a way to both rejoice and mourn over our daughter in the same moment, to hold and kiss her and to love her. We are so thankful that Saint Thomas Hospital had a Cuddle Cot, and that we were given this additional time with Helen James. We believe it was a crucial part of our acceptance, grieving and healing, and we cannot imagine our situation without it.
We were sad to find out that very few grieving parents will have access to Cuddle Cots. The device is practically unavailable in most hospitals, despite 24,000 babies being stillborn in the U.S. every year, which is 10 times as many deaths as those that result from SIDS. In our case, the Cuddle Cot was donated by a family who had been in a similar situation in the past. A huge part of our healing process has been having a mission — somewhere to funnel our grief and confusion and love and energy.  Joel and I decided to honor our daughter by creating the Helen James Foundation. Its mission is simple: To support grieving families who are experiencing a pregnancy or infant loss. We have focused on Cuddle Cot donations across the state of Tennessee and in Chicago. Additionally, we donated funds to the Saint Thomas Midtown Hospital to help with the construction of a new Family Bereavement Room. This room provides families who have lost a child  a place inside the labor and delivery unit to spend time with their baby. They will be able to give their child a bath, dress them and create hand and foot imprints keepsakes in a private space. We plan to continue raising funds for Cuddle Cots and also to support families through donations for grief counseling and support groups.

​ We recently added infertility to the foundation’s mission in January of 2021. Our hearts have been heavy as we have walked beside our friends who have experienced this. Our hope is that we can help raise awareness and support and be advocates for those experiencing the difficult journey of infertility.

Joel and I will always cherish our first-born child and forever remember the ways that Helen has taught us to love and hold tightly to one another. We hope our story brings much needed attention to this rare, but life-changing Cuddle Cot device that gives grieving parents like us the gift of time. We also hope that we can be a source of support for parents experiencing pregnancy and infant loss or for those who are hoping to become parents.
We love you always and forever, Helen James, and we are so thankful to be your parents.

​PHONE CALL
 
I was sitting in my absolute favorite place… toes in the sand with nothing but the expanse of the emerald waters of the gulf coast before me.  To my right, my husband was drifting in and out of sleep.  All around me the sound of my four kids and their friends enjoying the first day of our summer beach vacation.  
 
My cell phone vibrated and my gynecology office number popped up.  Ah, the obligatory phone call to inform me that everything looks good, but because of my dense breast tissue I’ll be receiving a letter to notify me.  
 
I answered and Brandi explained, “something...something...anomaly...can you come in first thing Monday for an ultrasound?”  
 
“Monday...ummm no. We are at the beach for the next week.  You know I have dense breast tissue so I’m sure it's just ummm dense breast tissue.”  
 
Brandi asked me to hold for one minute while she spoke to the doctor.  She got back on the phone and explained, “the doctor would really like you to come back in as soon as you are able.  Does the following Monday at 8 a.m. work?  There is a small mass in your left breast that wasn’t there on your last mammogram.  When I saw it, I pulled your previous mammogram to compare to make certain it was just dense breast tissue, but it is a change that is of concern.”  
 
All I wanted to do was hang up the phone so I responded, “Next Monday is fine. Thank you.”  
 
Anomaly.  Mass.  Did she say anomaly or mass?  I should have asked that….should I call back?  No. It's just dense breast tissue.  I just had a mammogram a year prior.  I’m fine.  It's fine.  Breathe.  Don’t panic over nothing. I looked over at my husband.  The steadiest person I know--until it comes to me.  No. Don’t wake him.  Breathe.  I closed my eyes, but in that moment I felt the Spirit: open your eyes Carol.  And, when I did, I saw the light sparkling on the water.  I marveled at it’s deep jewel tones as it spread to the horizon, but up close the same water was invisible because it is absolutely crystal clear.  I dug my toes into the sand and felt the warmth of the sun. I heard my kids laughing..maybe bickering...and I praised God for his goodness. I thanked him for surrounding me with the evidence of His majesty and my blessings.  I thanked him for taking me out of my panic and reminding me that even if the worse lay ahead...I can count it all joy.  In that moment, I surrendered my circumstance to Him.  At that moment, I knew for the next week this was a private conversation between Jesus and me. Time enough for everyone else’s concern and worry.  At that moment, I wanted to focus on God’s abundance: a week surrounded by his beauty, my family, and His peace.
 
The week that followed was a blur of biopsies, mammograms, a breast mri, radiologists, oncologists, breast specialists, and surgeons. The initial plan:  lumpectomy to type and stage.   
 
My breast cancer was caught early (Praise Jesus), but the lumpectomy was more complicated than thought: the mass was not only larger than anticipated, but they found multiple other areas of concern (11 to be exact!)  As well, lab work revealed I carried the BRCA1 mutation.  The breast specialist went over my options, but was quite clear that a total bilateral mastectomy was unavoidable.  Chris and I prayed. We made the decision to get everything removed immediately, wait for the pathology report, and then take the results one step at a time.  
 
As I write this, I am 1 ½ years cancer free. Reconstruction is almost complete (still waiting for some tattooed nipples….) and I am getting better at not bashing into things with a chest I cannot feel.  
 
My story, however, is not about breast cancer, BRCA, mastectomies, or recovery.  So many courageous women have fought much tougher battles and shared their hearts to encourage others walking that path (myself included). My story is not about what I lost to cancer. I realized early on my story is about the abundance I have in Christ. 
 
Throughout my journey I wrote to God (I am a writer who frequently types her prayers and conversations with God). Today, I felt moved to share three of the entries:

1. It Begins: written waiting for the lumpectomy pathology report (the waiting was the worst, ok, maybe the drains, no the tissue expanders...it's a toss up)

 
The last month or so I’ve struggled to trust. My constant internal loop:  I will trust.  I will trust no matter the results.  In the morning when I wake up and in the evening when I go to sleep:  I will trust.  I will trust.  Trust is to relinquish control...it's not easy.  Especially for a control freak like me.  Honestly, my trust in this sounds more like: Jesus take the wheel! But I’m just gonna backseat drive in case I don’t like where we are going. Lord, give me a heart that turns “what if” to EVEN IF….
 
In my brokenness, I hear the Spirit whisper: BREATHE. BE STILL. SURRENDER. When I do, each time I do (because let’s face it I’m a multiple times a day arms crossed, foot tapping, obstinate girl), I feel my defiant spirit softening.  I feel my unrest settling.  I feel my fear receding. I feel His strength propping me up. I feel His peace filling every inch of me.  He reminds me:  my hope is secure.  
 
In the stillness...I remember:
 
His Will...my protection
His Word...my armor
His Grace...my abundance
His Spirit...my helper
His sacrifice...my salvation
 
In my weakness, His power is made perfect.  I remember the words of a dear friend...Jesus is not just a life vest; He controls the waves.  I know with Christ, I have more than I will ever deserve. So, I will trust.  

1. Mastectomy Day: waiting to be hooked up to IV drip (breasts covered in blue and red sharpie making me feel like a butcher diagram, but super attractive compression knee socks and an inflatable raft laid on top of me to keep me warm)  

 
As I face this uncontrollable circumstance filled with uncertainty, I can choose to drown in my fear and self-pity or I can rise by delighting in your sufficient grace. So God, I thank you. I am simply overwhelmed by your goodness and desire to be near.  You have protected me, strengthened me, and provided precisely what I’ve needed to take the next step in this journey, one I truly don’t want to take. You have given my spirit peace in the waiting. Evidence that you hold me in the palm of your hand. This morning I wrote Psalm 139 on my hand. To remind me of your faithfulness, goodness, and steadfast love when I feel uncertain and unsteady. I know just as you have carried me to this moment, you will continue to carry my broken, battered body.  I know EVEN IF the worse news comes, you’ve got me and all those I love. 
 
Please God bless all those that have covered me in prayer and showered me with such love that despair withered. Please stay near to Chris and our children while they wait. Please bless Lisa and thank you for having her, one of my prayer warriors, in the OR with me managing my anesthesia so my husband and children can have a bit more peace. 
 
Thank you for your steadfast love...I will trust.  

1. The Other side: (boobs implanted, scans clear, no longer subsidizing the hospital parking garage)

 
3 surgeries in 5 months. After a journey, I never anticipated traveling and one I am blessed to come out on the other side with more time with Jesus, more time to share the goodness of God, and more time to love and be loved, my thought:  what precious treasure is found in the midst of trial. So many lasting gifts from God to be thankful for, but two that stand out. The first treasure was time in stillness. As a mom to four--a Martha through and through--this trial forced me into stillness.  Forced stillness of waiting endlessly in doctors’ offices and weeks (that turned into weeks and weeks) of being confined to bed rest (some obnoxious healing complications). In that forced stillness, I sat at His feet, immersed myself in His Word like I’ve never done before. The more I sank into His Word, the more it filled me to overflowing.  The more I realized the beauty of the simple truth: God’s Word is living. His Word breathes light and life into the darkest and deepest pits. His Word edifies as it comforts. It convicts and it transforms. I don’t know what God has planned for me, but I know these past months were a gift to teach me to surrender more fully and cling more desperately, a gift to remind me when God is the greatest desire of my heart it is well with my soul. A gift that every “what if” can be used for good and for His glory.  The second treasure: this past year taught me with Jesus I have all the abundance I will ever need and far more than I deserve. That time not sharing Jesus is time wasted. I want, with all that is within me, to bless the Lord with my life. I want to burn with passion for Christ. I want every moment I am given in this fallen world...wrapped in my brokenness...to be used for His glory: because of who He is, all that he gives, and all that He did through Jesus.  
 
My breast cancer journey ignited my faith in ways I never imagined possible.  But, then again:
Through Christ all things are…  He truly trades ashes for beauty.
 
“But seek first his kingdom and his righteousness, and all these things will be given to you as well.”  Matthew 6:33
 

It's exhausting, but we stare at the photos of Ava in all her beauty plastered all over her hospital room...we see Ella and Ava light up with joy and screech with excitement when they see each other over FaceTime...we feel the generosity of so many of you...we love viewing the #wherewillavagonext photos...we hear about and meet people with success stories and amazing qualities of life when all of this is behind them...and we are recharged by this hope and light that we see at the end of the tunnel. We don't even begin to think that our situation is the worst there is out there. It sucks, there's no sugar coating that...some days are better than others, but we have one hell of a fighter in our #AmazingAva. We don't waiver in our belief in God or her for one second. She is stable, still intubated, and her team knows that she walks a tight rope. So we wait, we welcome the good days and hunker down on the bad.

We have the privilege of spreading awareness about congenital heart disease and pediatric organ donation. This is just the beginning of a lifetime of educating all those that care to gain insight and learn about a disease that effects 1 in every 100 children. There is no filter, no prejudice, no socioeconomic barrier. We see children and their families struggle from all walks of life. With continued research and medical advancements these children have the opportunity to become adults, and families get to raise their child that quite possibly they were told they still had time to abort before 25 weeks gestation.  

Thank you to anyone who has taken one moment to think about our family and Ava...if I haven't been able to thank you personally...Thank You for helping us get to where we are today.  I/We can not wait for the day that we get to spread the news of Ava getting her gift.

I wish I would have written more down on paper during this journey.  In all reality, we were surviving one day at a time, so I’ll give myself some grace in that it wasn’t my first priority to blog and document my feelings and chain of events during this time. It all began at our 20 week ultrasound. Since it was our second child, I told Brian he didn’t need to come with. I figured it would be a quick in and out. I knew something wasn’t right when the radiology tech was measuring the chambers of the baby’s heart over and over again. Crazy thing…it was a radiology student doing the exam. She kept her composure, but I knew something was up. She left the room at one point to get her supervisor and instructor. The instructor came in and measured the same thing over and over again. They asked me to go to the bathroom and empty my bladder to get a better position of the baby. That was their opportunity to discuss I assume. They asked me to head back up to my doctor’s office where I waited for what felt like two hours for the review and diagnosis to come from the radiologist. I remember feeling anxious yet calm. My OB doctor brought me back to an exam room and broke the news. I didn’t cry. I felt a sense of hope in my doctor’s eyes. Maybe she’s delivered this speech enough times before. Additional testing would need to be performed. I got in the car a bit shocked and frozen in my thoughts. I called Brian to give him the news but couldn’t get the words out. He worked a few blocks away, so I drove to pick him up…and so it begins.  
​
Our little girl was diagnosed with a congenital heart condition called Hypoplastic Left Heart Syndrome. Further testing was completed during pregnancy to confirm the severity and other malformations of her heart. Within two weeks we had a fetal echocardiogram. Once again, my nurse brain told my husband not to come; thinking it would just be testing not a conversation of diagnosis and prognosis. Wrong again. The specialist saddled up in a small exam room with me and laid it all out. We were at 23 weeks gestation by now. Hypoplastic Left Heart Syndrome confirmed. A narrowing of her aorta confirmed. Ventricular septal defects probable. The medical team is required to inform us of diagnosis, prognosis, and all of our medical options. I was told we could abort our pregnancy before reaching 25 weeks gestation in the state of Illinois. I was told we could carry to full term, and she would most likely struggle. I was told we may have two minutes with her or a lifetime. Surgical intervention would be absolutely necessary to help her survive, and he gave me a short synopsis of what those procedures were. Lastly, pediatric heart transplant was discussed as a possible last-ditch effort to sustain life.

We didn’t even think twice about our options. God created this life, God created her, God would see her through. Brian and I get asked all the time if it were better that we knew so early on, or if we would have rather not known the fate of our unborn baby. Brian and I would not have changed our path for anything. It was a path that was already laid out for us. We had faith early on that Ava would be okay.  We were able to research her diagnosis and interview with a team of specialists that would be caring for her after she was born. We moved into a tiny 600 square foot apartment two blocks from the children’s hospital a few months before Ava was born to keep life as local and simple as possible. The hospital we chose was Lurie Children’s Hospital of Chicago, and they gave us nothing but hope that Ava would prevail.  

Ava was born on July 16th, 2014 at 11:18pm. She was perfect. Apgar scores of 8/9. There were a million people in the room waiting for you know what to hit the fan, but nothing. Stable. I was able to hold her for about five minutes.  There was a peace and calmness about the room. I didn’t notice that everyone, but Brian and I, was holding their breaths. And whoosh, they swept her off to the NICU holding area with Brian in tow, to get her looked over before sending her to the Cardiac ICU at Lurie Children’s Hospital next door. About 2am they let me sneak over to the NICU holding area in a wheelchair to see her again before being transferred. I think I slept for 4 hours in my assigned room before heading next door to the 15th floor of Lurie’s to see my girl. I’m pretty sure I wheeled myself over there in a wheelchair. It is a little blurry, but I’m pretty sure I didn’t wait for help or permission. The hospitals are connected by bridges, so it’s not like I was the crazy person in a hospital gown roaming the streets of Chicago. I may have gotten a few strange looks though. Adrenaline is real. I was about 7 hours out from pushing a baby out, and I’m cruising the halls of a massive hospital complex to find my child’s room a city block away. I didn’t crash until 1 week later when Ava went down to the operating room for her first open heart surgery.

Ava was in the hospital for only 2 weeks. She had open heart surgery at 7 days old to repair her aorta. She thrived up until 6 months of life. This is when her next open-heart surgery was scheduled. Her left ventricle was showing signs of growth, so they decided to try to repair her septal defects rather than perform the Norwood-Glen-Fontaine procedures. Unfortunately, our girl struggled, and she was failing to get off of bypass during this surgery, so they had to make a couple adjustments to their plan. Too much pressure was building up inside the chambers of her heart, and the pressure was backing up into her lungs as well. They did what they could do to stabilize her to get her off of pump, but from this point forward we were on a downward slide towards heart failure. Ava was finally discharged home after 6 weeks of being in the hospital. Our hope was being crushed, but our faith was still strong.

For the next 7 months at home, we watched our baby girl deteriorate. She had little to no strength to sit up and keep food down. She would sleep 17 out of the 24 hours of the day. We fed her through an NG tube, which is a tube that goes up her nose, down her throat, and into her stomach. Her crib was in our bedroom, and I slept with my head at the foot of the bed so that I could leap up as soon as I heard her vomiting in her sleep. We would lay 3 to 4 blankets down underneath her, so we could just peel one layer back at a time after each episode.  Routine visits with the cardiologist was painful. I knew they didn’t want to speak the words but there wasn’t much else they could do until she really fell off the deep end. I begged for a G-tube from her specialists to remove the tube from her nose and throat. Finally, on her first birthday, July 16th of 2015 she had surgery to place a G-tube. This was a boost of hope that maybe life would be a bit more manageable at home. It was one day at a time still.  Surviving on multiple levels. Physically. Emotionally, Mentally, and Spiritually. It is all a blur.

An appointment was set to consult with Ava’s surgeons to discuss next steps.  Her chart had been sent to Boston Children’s Hospital and John Locke, MD (the head of pediatric cardiac surgery in the best cardiac children’s hospital in the world) was reviewing her case to see if they had any thoughts on how they could help her.  The decision was made for Ava to go to Boston for her next minimally invasive cardiac surgery because the team did not feel confident that she would survive another open heart surgery.  We just had to put our faith in whatever was to come.  On August 18th, 2015, I took Ava for a cardiac follow up appointment to do her routine imaging and discuss the teams plan for her next heart surgery.  Similar to the 20 week ultrasound during pregnancy, I could tell the radiology tech was not at ease during the ultrasound.  I was distracted by a giggling, playful one year old though.  In all of Ava’s struggles, you would have never known she was sick.

We went back to the exam room to wait for Ava’s cardiologist to discuss Boston a bit more in depth. I was distracted in the exam room again because Ava was laughing about something silly, and it kept me from the unease that I was feeling. Ava was far from well, but Brian and I were doing our best to keep medicine and food in her. We were not in denial that she needed more surgery to try and optimize her sick heart, but I don’t know that we ever allowed our thoughts to believe that Ava would be in heart failure awaiting a heart transplant. As her doctor walked in the room, I knew she was about to deliver a blow. She was calm but stated we needed to make our way over to the hospital and get Ava admitted so she could fast track her to the cardiac cath lab. The ultrasound revealed Ava’s left ventricle was no longer pumping. Her little pumper had had enough. She was in heart failure.
On August 18th, 2015, when Ava was 13 months old, we were told that she was in heart failure and her only hope was to wait for the gift of life, a gift that another family would need to decide to give her when hope was pulled out from under them. She struggled but fought every second. She was on a ventilator on and off at the beginning, but when arrhythmias threatened to take her life the medical team decided to keep her intubated until that gift of a second chance at life would come.

Ava waited 111 days before getting “the call.” She was on a ventilator for 68 of those last days. Awake and playing through some, sedated but awake through others, and paralyzed in a medically induced coma to help her rest during shaky times. Twice we gathered our family and the chaplain and prayed over her. My aunt, who is a Catholic nun, was in Chicago on a layover the first time Ava was steps from heaven. We sat on the couch in Ava’s room together and she asked me what I needed. I said to her, “I just want to pray. Can you help me pray?” We prayed the rosary together. The next time Ava took a turn for the worse, I laid my head next to hers, held her cold hand and prayed. I hope I never repeat this to her again. I prayed and asked God to take her if she was suffering. I whispered to Ava that it was okay if she couldn’t fight anymore. Never did I doubt Ava or lose faith that everything would be as it should. Whatever God’s will, we accepted it. Hope and Faith are powerful things. Jamie and Daniel Heard have taught us even more about the meaning of these words…

    On the morning of December 14th, 2015, we received the news that Ava would be receiving her heart that day. We didn’t know at the time, but Jamie and Daniel decided that weekend to donate William’s heart. Our girl Ava would be the child to receive the most beautiful gift from the sweetest boy. Jamie and Daniel, you have given us Hope, Faith, Love, and Life in your darkest hour. You took your tragedy and selflessly gave us a gift that all the money in the world cannot buy. You poured your love and faith into your child and now that overflows onto us. Although I know God has always had a master plan for our Ava, I believe that He gave you the strength to help Him carry out that plan. Your sweet William is “Alive in Heaven Now,” and your son has given our precious daughter the chance to live here on earth for whatever remaining years we have with her. As you told me, you asked your beautiful William, “Who made you?” and he would reply, “God made me!” The same goes for Ava the first time around and now a second time, “God made her.”

We look at photos of your family…the joy, the love, the faith, and your hope for a new home for your beautiful baby boy’s heart. Thank you for giving us joy, showing the world how to love, strengthening our faith, and giving us hope for our sweet Ava. Thank you for giving us the ability to honor your son every day for the rest of our lives.  Thank you for having the courage to reach out to us during a time when most parents would shut out the world because of their unending pain and grief. Thank you for reminding us that there are people like you and your family in this world. Thank you for the second chance at life you have given Ava. God put this spirit of survival and perseverance in her and all of us.
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Click here to learn more about organ donation or to sign-up to become a donor.