My Doernbecher Story

Brynn's Story - Doernbecher Children's Hospital

Brynn's Story

By Amy and Ryan

When Amy was pregnant with Brynn, during her first ultrasound we discovered she had a two-vessel umbilical cord. Because a normal umbilical cord is three vessels, Brynn had a larger chance of kidney and heart complications. During follow-up ultrasounds, we also learned one of Brynn's kidneys wasn't developing normally and that she had a mass in her abdomen.

That's when we went to Doernbecher.

At Doernbecher, Amy had a fetal MRI which showed Brynn had persistent cloaca, a single opening for her bowels, urinary tract and vagina. The mass in her abdomen was also pushing on one of Brynn's kidneys, and she had a tethered spinal cord.

After that, it was kind of a whirlwind. Dr. Bayne explained Brynn's condition to us, and Amy saw Dr. Shaffer throughout her pregnancy. Amy had ultrasounds every two weeks; we watched the mass in Brynn's abdomen getting bigger and bigger. Amy was induced at just over 36 weeks.

When Brynn was born, she wasn't breathing. She also weighed five pounds, two ounces—but her abdominal circumference was larger than her head. Because of her persistent cloaca, Brynn had hydrocolpos, a buildup of amniotic fluid and urine. The doctors immediately removed the excess fluid; after that, Brynn was only four pounds. And she couldn't eat, because you could see where her rectum was supposed to be, but it wasn't there.

Within a few hours, Brynn had both a nasogastric (NG) tube and a colostomy bag put in so she could be fed. In addition to the cloaca, Brynn had an atrial-septal defect and a ventricular septal defect in her heart. She was on a ventilator for 2 ½ weeks and in the neonatal intensive care unit (NICU) for a month.

We were so impressed with how much Doernbecher's NICU allowed us to be involved in Brynn's care. Brynn had a catheter because her urethra was emptying urine into her vagina; we'd have to drain the fluid twice a day. Dr. Bayne and Dr. Krishnaswami trained us so we could care for Brynn at home. And even though she was full of tubes, even though we had to drain fluid out of her frequently, this was how we bonded with our daughter.

When Brynn was 14 months, she was strong enough for the reconstruction surgery at which she would be made anatomically correct. This surgery took almost 11 hours. It's incredible: Doernbecher doctors basically rebuilt her belly button to her pelvis. Even though Brynn was born without reproductive parts, we are confident she'll have normal function and even be able to bear children someday. She's going to live a normal life—because of the care she received at Doernbecher.

We can't begin to say enough about Doernbecher. They allowed us so much hands-on care, and would always take the time to show us things we could do ourselves: Dr. Bayne would even coach us over the phone when we were at home. They honestly make us feel like family.

No one comes to the hospital for fun. You are up there for serious things, and when you are, it's a real comfort to know someone cares about you, what you're going through and how your baby is doing.

We wanted the best of the best, so we went to Doernbecher.

 

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Comments (1)

Nancy

I was there from the beginning, and am here now as well. I find it incomprehensible, the nurturing and level of knowledge The Doernbecher Family brings to the patient's family.

All I can say is "Thanks" for being there with us for our Brynnie."

Posted Apr 15 2014 07:03:30:540PM