Parents: Crissi Schewe and Jacob Mangen
Hometown: Sleepy Eye, Minnesota
Carried to term, lived 36 hours
Paislee Rose’s Story
It’s hard to know where to start, writing the only chapter in your child’s short life, but I will start from the beginning of our journey with Trisomy 18.
On Valentines Day of this year, I found out that I was 6 months pregnant. It was such a surprise, and something both Jake and I were not expecting. After the initial shock had worn off, and our excitement began to grow, we were beginning to prepare for the birth of our first child, a baby girl! We only had three months to prepare for her to join us in this world! But in a matter of 4 weeks, we had the crib and changing table ordered, a freshly painted coral and gray nursery, and an abundance of clothes filling Paislee’s closet. We were set.
Being that I was in Montana, finishing up my first year of occupational therapy school, I was receiving prenatal care in Billings, 12 hours away from my family, friends, and Jake. Check-ups had been going great. Paislee’s heartbeat was always within range, and she was very active inside her mommy’s tummy. After an ultrasound confirmed that she only had 1 kidney, I thought I had had my first and last pregnancy ‘scare’. But boy, was I wrong…
On April Fool’s Day, at a routine appointment, my OB expressed some concerns she was seeing in Paislee’s latest ultrasound. Her heart was enlarged and she may have a bowel obstruction. Dr. Papez set up an appointment that day with a specialist to further investigate the abnormalities she had been seeing. My heart was heavy and my mind was racing as I drove to my appointment later that day. I was blessed to have my professor meet me there to hold my hand and help me through this difficult appointment. I thought I had prepared myself for the worst possible outcome, but again, I was wrong.
The appointment began immediately with an ultrasound. The technician clicked away, measuring every organ and bone in Paislee’s small body. After an hour or so, the specialist came in and continued to assess the ultrasound. Two and a half long hours of staring at an ultrasound, the specialist finally set the probe down and said, ‘Unfortunately, there are many problems with this baby.’ My heart sank to the floor and a numbness overcame my body. She continued, explaining that Paislee had a heart defect, a bowel obstruction, low birth weight, a partially developed cerebellum, an improperly formed cerebral cortex, rocker feet, and choroid cysts in her brain. As she rattled off every anomaly, I remember praying for her to stop. Every abnormality she described felt like a knife to my heart, and I will remember that feeling for the rest of my life.
The specialist then recommended I do an amniocentesis, to test for any chromosomal syndromes. It was then that I called my mother to get her opinion. When she answered, I couldn’t talk. My mouth was dry and no words came out. I handed the phone to my professor and she explained what was happening. Together, we decided to go ahead with the amniocentesis. It was by far the scariest and most emotional procedure I have ever gone through. I don’t remember leaving the hospital that day. I don’t remember driving home. But I do remember every detail that occurred in the next 48 hours.
Jake and my mom flew out of Minnesota the next morning. They arrived in Billings around 9am and it was then that I decided to come home. School could wait. We packed up my room and piled my car as full as we could. On Thursday morning, April 3rd, we had another appointment with a cardiologist for Paislee’s heart. He confirmed that she would need immediate surgery because her heart would not pump enough oxygen to her lungs after she was born. We left feeling somewhat optimistic. Feeling that maybe, just maybe, everything would be okay. If surgery could fix her heart, we would do whatever it took to save our baby girl.
We left Billings, around 10am that day. We were halfway through South Dakota when we got the call. A phone call that would change our lives forever. A phone call that I will never forget. It was the specialist calling with the results of the amnio. Jake was driving, I was in the passenger seat, and my mom was in the back. My heart was beating out of my chest as I answered. The specialist then asked if we were driving, and I answered yes. She told us to pull over so she could explain the results. It was then, that I knew. The amnio confirmed a diagnosis of Trisomy 18, a syndrome that is ‘incompatible with life’. As I hung up the phone, my heart shattered into a million tiny pieces. I felt like vomiting. The life inside of me wasn’t going to make it. Our daughter wasn’t going to survive and there was nothing that we could do.
The next two months were hard, harder than I could have ever imagined. I felt Paislee kick. I felt her move. Everything ‘felt’ normal, but it wasn’t. Family and friends had a hard time knowing what to say when they saw Jake and I. Should they congratulate us? Console us? Doctor appointments from that point on were terrifying. Would we hear a heartbeat today or would we not? So many strange emotions and feelings that just didn’t make sense.
On June 8th at 9pm, I was induced. My labor was much easier than I would have thought it would be. My body took over after two doses of cytotec and by 8:30am I was ready to push! 18 minutes, 4 contractions later, Paislee Rose Mangen was born weighing 5 pounds 0 ounces and measuring 17 ½ inches long. Her face was more than perfect and her little rocker feet were the cutest things I have ever seen. Paislee had an abundance of dark red hair and she clearly looked like her daddy. And everyone commented on how much she looked like Jake. She smiled, made funny faces, and even hiccupped all day Monday. When given a finger, she grasped on and showed us how strong she was, telling us she was a fighter. For 36 hours, Paislee was visited and loved by many family and friends.
On Tuesday June 10th at 8:37pm, Paislee earned her wings. She was in my arms for no longer than 2 minutes before God called her home. She wanted to be in her mommy’s arms before she said her final goodbye…
Paislee was a gift from God. She taught us, and so many others, how precious life is and how easily it can be taken away. Jake and I are humbled that God chose us to be parents of such a precious angel. Paislee changed our lives for the better, and if given the chance, I would do it all over again just to hold my sweet girl one more time, to hear her coo and stroke her cheek. I have never experienced such an intense love and deep sorrow in a time frame of less than 2 days. I know that the Lord is here to carry and strengthen us during this difficult time, but right now nothing can ease the pain and heartache we are feeling. Leaving the hospital without our child was the hardest thing I have ever had to do…
Paislee is an angel, an angel of God who is happier than she could have ever been down here. She touched the lives of so many in her short time on earth and she will continue to be the center of our lives. She was a perfect miracle and I will be forever grateful for the time and memories we were able to share with her in those wonderful 36 hours. Those 36 hours were the best hours of my life.
How very softly
you tiptoed into my world.
Only a moment you stayed.
But what an imprint
Your footprints have left
On our hearts.