The technician’s cheerful demeanor had vanished almost immediately after my appointment began. She fell unusually quiet and I noticed that her brow began to furrow in heavy concentration. Twenty minutes turned into thirty, thirty minutes became forty, and eventually she stood up, breaking the long silence with a brief comment on how she would return after she had spoken to the doctor.
A few minutes later, a deep, booming voice joined us in the dark room, “Hello, Julie. This is the OB Department at Minneapolis hospital calling. I have looked at your scans in detail and I am afraid that we are seeing some things that are concerning us today about the baby’s development. First of all, I am noticing that the heart does not appear to have formed enough chambers. In addition, we are seeing a larger than normal amount of fluid collecting at the back of the neck, which is often an indicator of chromosomal abnormalities. I am very sorry. We will arrange for you to discuss the results with your doctor tomorrow and go in for further testing if needed.”
The doctor’s voice vanished from the room and the technician walked me to the lobby, which was now empty of staff and visitors for the day, as the building had since closed. Suddenly, I was left alone, without anyone to ask questions of, and not knowing what to do next. I headed for my car as the scene played back in my head. Surely, this was some sort of dream or hallucination. This couldn’t be my actual life. I was healthy and so was my husband. We were parents to a normal one year old girl. That pregnancy had gone smoothly without any issues or problems whatsoever. I wasn’t that old yet, and I had been taking my prenatal vitamins since before I had even known I was pregnant. I was being so careful. Why was this happening?
I started the car and immediately phoned my husband. Tears began to pour from my eyes as I drove in the direction of Hannah’s daycare. As I drove, I attempted to explain what had just occurred with the ultrasound appointment. Mitch did his best to console me on my trip across town and in the hours following that night, as my heavy sobs echoed through his hotel room 400 miles away. He encouraged me to call friends for support, but I eventually became so worn out from crying and worrying that sleep overpowered me, and I settled into an uneasy rest.
The next several days were a blur. I cried a lot, slept very little, and barely got out of my pajamas longer than a few minutes here and there. In the meantime, Mitch had returned home and was looking after Hannah primarily, allowing me to catch up on the sleep I had missed and to focus on my schedule for the coming weeks. I had been advised that I would need additional appointments with a perinatal office now that we had this news. The office had suggested a genetic screening and a heart echo at the very minimum in order to determine exactly what was happening and several more ultrasounds at closer intervals to keep an eye on growth and heart rate, which was beating at a slow 94 bpm.
We proceeded to meet with our geneticist as planned, and after several hours of discussion, decided to opt for a placental sampling known as a CVS screen to get more chromosomal information on the baby. As there was minimal risk to myself or the baby in this procedure, and my anxiety was already peaking, I felt secure enough to agree to this simple procedure. I knew that my long term worrying was likely to cause more damage to the child growing inside me than any screening could ever do by itself.
The sample was collected, and afterward we were released back to our regular lives for several days. The geneticist informed us that we would hear from her several times as results were tabulated. Two days later, we got our first call; the baby had passed initial screening for trisomy 21, 13, and 18. She was safe from three major chromosomal conditions, at least. I suddenly felt a huge weight lift from my shoulders. I wanted to jump for joy. Things were finally starting to look up, it seemed, and my sense of optimism was returning.
The following weeks brought more calls. With each round of results, I became more and more encouraged. Nothing was being found that was out of the ordinary. The geneticist assured us that chromosomally speaking, we would be having an ordinary baby. And it was a girl! I was over the moon that my Hannah would have a sister to enjoy tea parties, dress up, and barbies with. I pictured them having so much fun as they grew up together.
Weeks passed, and the day of our heart echo came. I had spent some time in between researching heart surgeries and making plans with my office for leave after my daughter’s birth, as I knew at the very minimum we were looking at a couple extra weeks in the hospital and some minor surgeries. By this time, we had also decided on a name. She was going to be called, Jordyn Hope. Jordyn, which we had decided on months before her conception, and had by now stuck. Hope, which we had added as her middle name in those first frightening days to remind us never to give up Hope on her or on God.
After scanning Jordyn’s tiny heart for close to an hour, our cardiologist finally turned and began to explain her findings: much of it was medical jargon that made no sense, but I do remember the words, “incompatible with life” cutting like a blade through my chest as she continued through her long explanation. She had just sentenced my baby to death.
She excused herself, promising to draw a picture and come back with it as a means of helping us understand better, and I was left sitting next to my husband in shock. There was so much medical technology available in this day and age, I thought. How could they be so sure from the word go that she was going to die, and not even entertain the idea of giving her a chance?
The doctor returned and explained further: The baby’s heart was beating at an average of 56 BPM, far below that of a normal fetal heart rate of 110-160. The left two chambers of her heart had not formed, a condition known a hypoplastic left heart. She also had a connected upper chamber or common atrium, and a ventricle that wasn’t fully closing on her right side, which was causing blood which should have been moving forward to her lungs and other organs to back up and collect in the chamber, expanding it to an unusually normal size. She was developing hydrops, or fluid that her body was hanging onto in a desperate attempt to get her heart to function. Unfortunately, this meant that her heart was not meeting the demands of her tiny body and was already failing her. If that wasn’t enough, she also had been diagnosed with Heterotaxy, when doctors noted that her stomach had not settled on the correct side of her body, and she was now at risk of immune dysfunction and learning disabilities. With 20 weeks to go in my pregnancy, I was advised to expect Jordyn to pass away long before she ever made it to term. The medical staff offered to arrange a pregnancy termination on my agreement.
Since my early years, I have been a conservative Christian and am very much prolife. It is not something I publicly vocalize, but it is something that I am very proud of. I have never felt that is was necessary to aggressively push my values and make others uncomfortable. However, when asked, I will strongly defend what I believe without hesitation. I don’t make it my mission to judge or correct others, hoping to convince them to believe like me as I am no saint, but I digress.
I had made my values clear for many years, and many friends and family knew where I stood on abortion. I never believed, however, that God would call me into a situation that required me to demonstrate my commitment in such a public manner. Yet, here I was. I declined the offer of the doctors politely, explaining that this was in conflict with my beliefs as a Christian. Fortunately, the doctors were respectful, and once they understood my viewpoint, I did not hear it mentioned again.
I continued to refuse, however, that there was nothing that could be done to save my daughter’s life. Feeling that I would need to fight harder and advocate more strongly, I began to reach out to other moms in my situation asking for advice. I spent hours scouring the internet for answers each night, long after I had tucked in Hannah. I spent my breaks at work calling hospitals and clinics begging for second options, additional tests, and asking to speak with every specialist, coordinator, nurse, and surgeon available. My mission became one to fight and not take no for an answer.
Over and over again, however, regardless of where I turned, I kept getting the same opinion: there was nothing anyone could do. This was a lethal situation, and every procedure that existed didn’t even offer a microscopic chance of improving or prolonging Jordyn’s life. I would often collapse in tears to the floor after days of fighting and having my hopes dashed repeatedly. Then I would pick myself back up, get on the phone again, and ask for another opinion. All the while, Jordyn continued to hold on, longer than anyone had initially expected.
Today, we have made it 8 weeks from that first fateful day. However, Jordyn’s condition has worsened in the meantime and we have run out of experts to talk to. Her heart rate has become irregular and is now beating at a sluggish 49 BPM. We know at this point that she is only barely with us, and after many weeks praying, begging, struggling, and talking, we have decided to pursue palliative care and keep her as comfortable as possible in her final days. If it is the only kindness I can show her in her short time on earth, I will go to every length to provide her with love and happiness until her last breath. I will continue carry her until there is no longer a heartbeat, or until I am forced to deliver, whichever comes first. And I will do it proudly.
In this, the interim, I am taking the time to read her stories, write her letters, buy her gifts for her memorial, and arrange photos so we will never forget her. I am telling her about God and her family and making peace with the fact that I will be giving her back to the Lord for safekeeping as I live out the rest of my life. It breaks my heart in two that I will never hold her, hear her laugh, or watch her open a birthday gift.
Yet I still have hope; hope that Jordyn will not suffer and release her soul to God peacefully. Hope that she will be protected and happy until we are reunited again, and hope that she will know how much we love her. God created her just for us, exactly the way she is, and she will always be our little blessing. I am very proud to be the mom to both my sweet Hannah, who lights up my life with her little smiles, and her angel sister, Jordyn Hope, until the day we meet again.
Psalm 139: 13-17
For you created my innermost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book before one of them came to be.
Julie Erickson is mom to a cute, rambunctious 22 month old named Hannah and is currently pregnant with her little sister, a heart warrior by the name of Jordyn Hope who has received a life limiting diagnosis.
Julie’s family braves the winter cold of Minnesota each year in their Minneapolis home keeping busy writing, decorating, baking, and visiting friends.
Julie recently joined up with Hannah’s heart and Love as a contributor after learning of her unborn daughter’s condition at 20 weeks pregnant. She has decided to do what she is able to bring encouragement into the lives of other hurting moms like herself and spread awareness of pregnancy and infant loss as a means of empowering women who have fallen victim. She welcomes email messages to firstname.lastname@example.org.