I have two beautiful and healthy daughters.
Lyla was born in 2016. We were so excited to become parents, but bringing her into this world proved to be much harder than we anticipated. I had gestational diabetes and also went into preterm labor at 31 weeks. My water didn’t break until 34 weeks, but then labor never progressed. I had to have a c-section, and she was in the NICU for 6 weeks.
Nora was born in 2018. She was born via c-section early in the morning on the first day that she was considered term at 37 weeks. That part was much easier than her sister, but my pregnancy with her was exhausting. My gestational diabetes was uncontrolled no matter what I did. I was on insulin injections multiple times a day. I was on weekly injections to try to prevent preterm labor, and I had doctor appointments an hour away twice a week. I was so anxious and paranoid after our experience with Lyla, I just could not enjoy any part of my pregnancy.
With my difficult and high-risk pregnancy history, we were nervous about trying for a third child. My greatest happiness in life is being a mother. I’ve always dreamed of having four children. I assumed four might not be truly attainable for me anymore, but we longed for just one more. We wanted a little baby brother to complete our family (though we would have been happy with a healthy girl as well).
We started trying for a third baby in February 2021. I got pregnant with Lyla and Nora fairly quickly, so when a few months came and went, I started to get worried. Finally in July, we got that positive test. We were beyond excited! Unfortunately, just five days later, I miscarried. We were devastated. We felt like we didn’t have anything to remember this baby by. We didn’t know the gender and hadn’t picked out a name. We didn’t even have any ultrasound photos, and we obviously didn’t have our baby. I bought myself a ring in remembrance. I thought it was so beautiful that people would comment on it, and I’d have an excuse to tell them about my angel. We also decided to name this baby Sprout....“Our little Sprout”. It just felt wrong to leave our precious baby without a name.
We started trying again right away, and in October we got another positive test. I tested every day for 2 weeks because I was so paranoid that I would miscarry again. As the weeks went on, that anxiety faded. I told myself that one out of every four pregnancies ends in loss. I’ve had my turn, and after all that we went through, there’s no way this pregnancy could be any worse.
We took the girls to a private ultrasound place so that we could all be together to find out the gender. It was a boy! We finally completed our family, “Our baby Jack-Jack”. I even passed my glucose screening and wasn’t going to have to deal with gestational diabetes. I was feeling so happy and hopeful. We bought all the furniture, clothes, and toys. The girls talked to their baby brother every day. Lyla wanted to hold him and feed him. Nora sang songs to my belly and gave it kisses.
Everything was going well until my 20 week anatomy scan. They found fluid in his kidneys and a cyst in his brain. My doctor told me that either of these things were not a cause for concern. We would monitor them, but they both would probably resolve on their own. She did, however, suggest that we do the quad screen to check for chromosomal abnormalities since we had an abnormal scan.
The labs came back as a 60% chance that Jack had Down Syndrome. I didn’t believe it. We are both younger and healthy, and we have no family history of anything. Our doctor told us we could go to the high-risk clinic to have a more detailed ultrasound and an amniocentesis. I declined the amniocentesis because the results would not change our care, and honestly, the procedure just terrified me. We went for the ultrasound, but I fully expected them to tell me it was nothing to worry about.
At the high-risk appointment, the doctor told us that they had found Jack to have a shortened nasal bone. This raised his odds of having Down Syndrome to 80-90%. We were again offered an amniocentesis to confirm, but she told us that the only reason we needed one was if we wanted to terminate the pregnancy. We declined and went home. We were devastated. We were terrified what this would mean for our baby’s health and his quality of life. We were scared of what kind of strain this would put on our family or our marriage. We were worried that we didn’t have what it takes to raise a special needs child.
Over the next few weeks we had more ultrasounds to monitor him closely and rule out the birth defects and abnormalities most common in Down Syndrome. We did a lot of research and started to see a therapist. We were working through our grief of the loss of the life we had envisioned for our son. We were reaching a place of acceptance. They had found nothing wrong with our baby. The fluid in his kidneys and the cyst in his brain had resolved. They had ruled everything out except for a tiny spot on his heart. They just couldn’t see what they needed to see because Jack was always so active and strong. He never held still for an ultrasound. We were just thankful he was healthy, and we were determined to give him the best life with as many resources as possible.
I went to see a pediatric cardiologist to get a better look at his heart. He saw the same spot as the high-risk doctors. He had me walk up and down the halls to try to get Jack to turn or fall asleep so he could get the images he needed, but Jack was strong and stubborn. The doctor said it was just best to assume he had a small VSD. He said if it was there, it was only 2mm. He said it should cause him no harm and would most likely close on its own. This was pretty good news. However, he also saw something else. Jack had a one-sided pleural effusion. One of his lungs was full of fluid. I was terrified, but my doctors reassured me that this can be seen in babies with Down Syndrome. It most likely confirmed his diagnosis, but didn’t place him in immediate danger. We would monitor it closely, and maybe he would need it drained at birth if it didn’t resolve on its own.
I had an appointment the next week that showed the fluid was stable. We were just stuck in 'the waiting phase' to see if it was going to resolve or not. We were making plans to switch OBs, as I was not going to be able to deliver at my local hospital anymore. He was still getting stronger, and my husband and my girls got to feel him kicking.
Then on a Thursday at 28 weeks, I realized I hadn’t felt him move all day. I went into my regular clinic. He still had a strong heartbeat, but his fluid was so much worse. He had developed hydrops. I had read about this and knew his odds of survival were now 50/50. He had fluid in both of his lungs, his abdomen, and the tissues around his face and skull. I couldn’t think straight. How could this possibly be happening? The doctors told me there was nothing anyone could do for me right now. I went home and followed up with the high-risk clinic the next day.
At the high-risk clinic on Friday, the doctor said his heartbeat was still strong, even though I still couldn’t feel him moving. He gave us our options. I could travel to Colorado to have an abortion, I could travel to Minnesota to see the hydrops specialist and see if they could place shunts into his lung cavity in-utero to drain the fluid, or I could wait and most likely watch him die.
We didn’t know what to do. I’m a nurse. I understand the importance of a DNR. I know the importance of letting a terminal loved one die in peace. We were not interested in attempting to save a baby that was going to have no quality of life, but we felt like we had to try something. We chose to go to Minnesota. We wanted to at least meet with the specialist, get a second opinion, and find out what his odds were. The appointment was made for Monday. There was nothing anyone could do. So, I worked the weekend and Sunday night we drove to Minneapolis and got a hotel.
Monday morning we met with a genetic counselor. He didn’t have much to say since we didn’t have a family history of anything and did not have a confirmed diagnosis for Jack yet. He just talked about how Down Syndrome is almost always a fluke. No women in my family have an increased risk of these complications now, and my risk would go back to any other woman my age for any future pregnancies. Then we met with a nurse who did my intake questions and took my vitals. I explained that I had felt him kick several strong times Friday night just before bed, but other than that I hadn’t felt him since Wednesday. Then we went to the next room for the ultrasound.
She waved the wand across my belly and my heart sank. I immediately said, “Does he have a heartbeat?” I could tell she couldn’t say anything. She said something about needing to wait for the doctor, but I knew. She moved quickly past his chest again and I said, “I don’t see a heartbeat.” She paused and said, “I don’t either.” She left to get the doctor while my husband and I just sobbed.
The doctor explained to us that he died from the chromosomal abnormality. He said there was nothing we could have done. He wouldn’t have recommended the shunts, and they wouldn’t have helped. He said the amount of fluid in his lungs was not enough to have compressed his heart. The hydrops was just the presentation of his little body already shutting down.
We drove back home. The whole way we were crying, calling family, scheduling my c-section, hiring a photographer, arranging for a baptism, and choosing a funeral home.
The next day, April 26th, 2022, Jack was born at 2:21pm. It was the hardest thing I’ve been through in my life. My husband and I took some photos with him, and then my girls came in one at a time. My six year old was hesitant, but my three year old held him several times. The rest of my family came in and we had him baptized. We spent a few more hours with him and then he went to the funeral home.
It was miserable sitting in the hospital, recovering from a c-section with no baby. It was horrible walking out to go home with no baby.
We went and saw him at the funeral home, and I got to hold him one more time. It was much more peaceful than at the hospital. I really struggled to give him back and leave without him again. We had his funeral, and then we had him cremated.
Now that it is all over and I’ve lost 2 babies in one year, I’m just a mess. I have to keep functioning for Lyla and Nora. I think it is important to show them my grief. We talk a lot about feelings. We talk a lot about our babies in Heaven. We also have to have fun. My girls deserve happiness. They deserve to enjoy their childhood even though their Mom is just broken.
I find peace in the fact that my little Sprout and precious Jack didn’t suffer. All they ever knew was warmth and love. I’m trying to find ways to honor them. I just need the world to know they existed and they mattered.
Thank you for letting me share my story.
IN HONOR AND CELEBRATION OF JACK, DONATIONS CAN BE MADE HERE. ON BEHALF OF THE JUDGE FAMILY, THANK YOU FOR YOUR GIFT.