“You were right to feel strange about the ultrasound. Some abnormalities have been found, possibly part of a chromosome defect.”
That is how this whole mess started. I was sitting on the edge of my bed, listening to the doctor talk about the baby growing inside of me. The baby was kicking in my belly so I was hoping that was a sign that what the doctor feared was not true. But unfortunately it was.
On September 11, 2009 we went in for a level II ultrasound. This showed more signs of fetal abnormalities; a two vessel umbilical cord (should be three), rocker bottom feet, two holes in the heart (atrial and ventricular septal defects). Having just one or two of these was enough evidence of a chromosome abnormality, but the combination of all three almost guaranteed it. The doc suspected Trisomy 18 (which is fatal within the 1st year of life). We prayed this wasn’t the case, and after receiving the amniocentesis results we were relieved to learn that no, it wasn’t a trisomy, but there was a deletion on one of the two 18th chromosomes. The scientific term for this is distal 18q- and there is a 1 in 40,000 chance of having this defect, so in my eyes this was a random lightning strike. We were told the condition may or may not be fatal and although we were past the 20 week point, special considerations could be made if we wanted to terminate the pregnancy. We were devastated.
The pregnancy continued and at 35 weeks Pearl failed her stress test (monitoring the heart in utero for appropriate heart acceleration/deceleration with movement) and I was pre-eclamptic. A c-section was decided and I was offered the option to not monitor the baby during the procedure. I was so confused. I asked the doc, “Doesn’t that mean if she gets in trouble during delivery we wouldn’t know and she could die?” (at this point her condition wasn’t considered fatal) and the doc replied with a yes. My response, “So if a suspected murderer comes into the emergency room with gunshot wounds, it is your job to save him, but you are giving me the option not to do everything possible to make sure this baby lives?” I was outraged. I told him yes, I wanted to have the baby monitored to the fullest extent possible.
As I was prepared for my c-section a chaplain came to visit. She asked if I wanted the baby baptized in the event she died in the delivery room or shortly after. I was so confused. We were preparing for an impaired baby, not a dead one. Despite my aching hear I said yes.
Pearl Annabelle Severson was born on December 11, 2009. She brought with her two surprises; 1) she was a girl 2) she didn’t have eyes. Nick was with Pearl and the NICU team in a room alongside the delivery room and after a few minutes he came in to tell me she was fine, but that she was born without eyes. My heart sank. I had been told at my last OB appt that they were having a hard time locating the lenses of her eyes, which meant one of two things; 1) her eyes were really small OR 2) she didn’t have any. I put my hope in the former and didn’t share this information with Nick. I thought I was protecting him, and subsequently myself, from unnecessary worry. Instead I brought him into that delivery with no inkling of this as even a possibility. Keeping that information secret is one of the biggest regrets of my life. My reluctance in not sharing that information with Nick has caused him much grief and for that I am truly sorry.
Pearl spent one week in the NICU and was doing so well she moved to the stepdown nursery. She was a rockstar! She started to slowly hold her own body temp, bottle feeding, eliminating and responding to stimuli. We had specialists coming in constantly; talking about heart surgery, braces for her feet and prosthetics for her eyes. She was born 4 lbs and once she hit 5 lbs we could go home and start building our lives with a brand new, yet greatly impaired child. Then the breathing issue started.
Pearl would have “episodes” where her breathing would increase to 115 breaths per minute, and then return to normal. This happened inconsistently, but enough to be a major concern. Again the specialists came in and they checked everything; her spleen, her lungs, her heart. They could find no cause. Every episode became a little more difficult and soon she could no longer bottle feed. It was too hard to breathe and eat at the same time so she was given a feeding tube. The doctors were baffled.
Then an angel in the form of a doctor appeared. A soon-to-be retired doctor picked up a shift in the nursery and was assigned to Pearl. Oddly enough his background was in pulmonary and respiratory medicine, which is exactly what we needed. Using his expertise he determined Pearl’s brainstem was unable to control her breathing. There was nothing we could do.
Knowing that Pearl would most likely die, we were given the option to not resuscitate her, should she go into cardiac arrest. With us traveling from southern MN to Children’s in Minneapolis every day, it was very possible this could happen without us being there. My greatest fear was of her dying alone, so our orders were to resuscitate her, in the hopes we could get there before she passed.
It was two weeks after Pearl’s birth that we took her home on hospice care. The doctor’s gave her a week to live, and because we wanted to spend time with her free of monitors, tubes and cords, there was no guarantee she would even survive the car ride home. We gathered up her things and said goodbye to all her wonderful doctors and nurses and headed home.
Pearl survived the trip home and made it one week longer than the doctor’s anticipated! We were blessed to spend two whole weeks with her. During that time we were visited by friends, family and neighbors around the clock. Gifts of money, food, clothing and mementos were pouring in from every direction. I can honestly say that not once during that entire time was Pearl ever alone. She was always, always held. We took turns holding her at night and it was during these quiet, intimate hours I enjoyed her the most, simply as mother and baby.
On January 10, 2010 at 3:16 am Pearl Annabelle Severson passed away. As I lay on the couch, her head on my chest I felt her take her last breath. It was such a calm and peaceful moment. I can’t explain what a gift it was for God to let me be there when she passed. As it was so eloquently stated by Sally Field in Steel Magnolias, “There was no noise, no tremble, just peace. Oh God. I realize as a woman how lucky I am. I was there when that wonderful creature drifted into my life and I was there when she drifted out.”
So there it is. The story of Pearl’s life and death. The time with her was so very brief but so very, very powerful. I love telling people we had 300 people at our wedding and 300+ at Pearl’s funeral. Feeling that kind of support and outpouring of love is something I hope everyone can experience in their lifetime. It was simply amazing.
Like the pearl, whose luster is forever undimmed, so shall your memory remain in our hearts.Unknown