Our much-loved and much-longed-for daughter, Stella Rose Eber, was born on October 4th, 2010 with multiple birth defects due to a very severe case of Wolf Hirschhorn Syndrome. She “went home” (to her heavenly home) five days later, on October 9th, 2010.
We discovered something was wrong when I was nineteen weeks along during our anatomy ultrasound, just moments after we found out that, after having two sons, we were finally having a little girl. The sonographer couldn’t find Stella’s second kidney. She was also measuring three weeks behind in gestational age; I still remember the sonographer asking me multiple times if I was eating enough.
We were leaving for vacation right after the ultrasound, and we thought what better way to start our vacation then to celebrate finding out the gender of our new baby. Instead, I hurried outside where Mike and the boys were waiting for me in the van. Mike knew something was wrong before I even mouthed the words. He saw my worried face and the tears forming in the corners of my eyes. I told him I had to stay while the nurse called the specialist and set up an appointment.
My worst nightmare began while I listened the nurse say to the first perinatologist she called, “I’m sorry, but she can’t wait that long for an appointment. She needs to be seen right away.” After her second phone call, she confirmed an appointment for after we returned from vacation. I left the office with a heavy heart and the nurse’s feeble attempts to encourage me: “Try not to worry while you’re on vacation.”
Then, the phone calls that should have been joyous were instead mixed with concern. I was pregnant with the first granddaughter on both sides; it should have been a time of happy shrieks from the other side of the phone as I announced the news to family members. Instead, I had to say, “Well, it’s a girl, but there’s a problem.”
The next sixteen weeks were a whirlwind of OB and perinatologist appointments, sometimes as many as three in a week. Each time I went to the perinatologist, the list of problems with my little girl grew longer. Multiple Heart Defects, Pelvic Kidney, Pericardial Effusion, Low Fluid, IUGR. As the time of her birth loomed near, I became more and more distraught about how long she would survive after birth. I treasured every moment with her inside of me, feeling her kick, flutter, and hiccup. But, it was also physically painful to carry my little girl. The bigger Stella grew (which wasn’t very big) and the lower my amniotic fluid became, the more it hurt to have her in my belly. At 37 weeks, Stella stopped growing, and Dr. P told me, “The gig is up. She’s coming out.”
Stella was born the following Monday. I remember looking down at my belly just hours before her birth, thinking that it wasn’t big enough for my baby to come out. I only looked about six-months-pregnant, and I could [almost] still touch my toes. At my appointment the previous Friday, the sonographer estimated Stella to be a little over 4 pounds. And she was. She was 4 lbs. 6oz. when she was born. Such an itty bitty little thing.
Her heart defects included severe coarctation of the aorta (COA), ventricular septal defect (VSD), and mitral valve reflux. While Stella was safe and warm in my belly, our pediatric surgeon was optimistic that he could fix her heart. When Stella was born, though, the doctors discovered complications that prevented her from having surgery. As it turned out, Stella did have both kidneys, but they were underdeveloped and could not effectively flush toxins from her body. Her oxygen levels dropped quickly after she was born, and she was given prostaglandins right away to keep the fetal artery in her heart open. These same hormones that were keeping Stella’s heart working also caused her lungs to fail her, and she had to be put on a ventilator.
Four hours after her birth, Stella was transferred to Egleston, where she spent the entirety of her short little life. It kills me to this day that she spent most of the five days she was alive hooked up to machines, helpless, and stuck in an isolet instead of in her Mama’s arms.
During the course of the week she was alive, Stella’s condition deteriorated, and the doctors’ discussions changed from when she would have surgery to deceleration of her care. On Friday, October 8th, we learned that Stella’s birth defects had all been caused by a chromosomal deletion (4p), duplication, and a translocation (from 8p). On Friday, we learned that there was no medical hope. Stella appeared to be in significant pain, and she stopped responding as often, laying completely still when she was placed in our arms (along with the 40+ tubes that were hooked up to her). After many prayers and tears, my husband and I dedided we would remove her from life support in 24 hours time, at 5:00 PM the next day. We set aside Friday evening and Saturday until 4:00PM for anyone who came to meet her to do so. Many friends came to meet our sweet girl, cried with us, and prayed with us. We will always be extremely grateful for our friends who were brave enough to come meet our dying baby.
Shortly after 5:00PM on October 9th, 2010, our little Stella went to be with her Creator. Her life and death has forever changed us. We will always love our Stella Rose.