Our son, Mikey, just celebrated his birthday…a day we never thought he’d live to see.

When I was 20 weeks pregnant with our first and only child, we went for a routine ultrasound and learned that our worst fears had come true. Mikey appeared to have a “severe abdominal wall defect.” After seeing three perinatologists and getting three similar opinions, Mikey’s condition was diagnosed as “cloacal exstrophy,” an extremely rare birth defect affecting the bladder, urethra, genitalia, large intestine, spine and lower extremeties. In addition, he had a kidney that had stopped growing and functioning. It was recommended that we terminate the pregnancy. We decided to continue on.

During my 28th week of pregnancy, a follow up ultrasound detected no amniotic fluid. They put me on bed-rest to determine whether this was a placenta-related issue. If it was, my fluid would replenish. It didn’t. At this point, we were informed that Mikey’s only functioning kidney had quit working. They told us to expect to lose Mikey in the womb or within days of his birth. We repeatedly asked if there was any chance for survival. Three of three perinatologists told us that they just couldn’t see how it could happen…a baby cannot survive without kidneys. Even though it was late in our pregnancy, they reminded me that termination might be better than continuing on with an agonizing journey that would surely end in death.

At this time, with consultation from a neonatologist and perinatologist, we made the decision to deliver vaginally. Due to the circumstances, doctors couldn’t see any benefit to delivering via C-Section. It was also determined that it would be best not to monitor the baby during birth. They didn’t want to find the baby in distress and have to do an emergency C-Section for a baby who wouldn’t live. They thought that this would be an “unnecessary surgery” for me, given the situation.

The anxiety I experienced as I wondered about the fate of our son who was still alive and kicking inside of me is indescribable. I prayed that I would make the right decisions. I feared that I’d bring a child into the world who would only live to experience pain and suffering, and I ached to welcome him into a world of love and comfort. I wondered if it would be more peaceful for the baby to end things, but the thought of not giving him a chance was devastating. I tried to put my religious beliefs aside to make unbiased choices. However, I learned quickly that I had to entrust my son’s fate to God…I just wasn’t big enough for this. The doctors assured me that they would keep our son pain-free and that he’d always be peaceful. It brought me great comfort to know that I still held hope for my unborn son…and that I had entrusted his life to God.

I went into labor one morning during my 36th week of pregnancy, and by that evening (around midnight), I told my husband I was “ready.” We drove to the hospital not knowing what to say to each other. The day had finally come. During my difficult labor, my placenta abrupted twice, causing me to bleed. I wondered if I was losing Mikey already. The next morning, a team of doctors and nurses huddled in the corner while my OB counseled me to push.

All I remember is utter silence when Mikey was born. You could have heard a pin drop…there wasn’t a sound. I thought he had died during birth. My husband didn’t look at our baby….he just cradled my head. The doctors whisked Mikey to the corner of the room, assessing the situation. A few minutes later, we heard was a faint cry. I’ll never forget the relief I felt…knowing he’d made it through the delivery and that I would get to meet him.

A nurse brought Mikey over to us. I can hardly remember anything but trying so hard to engrain the memory of his face in my mind. He was a beautiful baby, and I thought that this may be the only time I would ever see him. I didn’t get to hold him, but I was able to kiss his head before they rushed him to the NICU.

A team of surgeons operated and found that his bowel had attached to his bladder. Mikey actually had a mixture of feces and urine coming out of his penis. He was born without an anus, so they made a colostomy. He also had a mild form of spina bifida, so the neurosurgeons untethered his spinal chord. The doctors still say they’ve never seen an anatomy quite like Mikey’s. It turns out that my amniotic fluid was gone because Mikey was recycling it through his own little body. It took several days of testing to determine that his only good kidney was indeed working. I will never forget the day the nephrologist told us that there was no doubt that “this kid is going to make it!” My husband and I were completely dumfounded. It was our happiest moment….ever!

Mikey’s birth and tenacity to survive what seemed the impossible has taught me to view life a way that I never could before. Our experience has enriched our lives and opened our eyes. My son has taught me who I am, and I know my husband would say the same about himself.

I am glad that we listened to our hearts and gave our child the chance he deserved. Today, Mikey is an amazing toddler…doing all the normal things that kids do. If we didn’t tell someone about his “problem” they would never know that he wasn’t “normal.” Mikey has brought a joy to our lives that we never knew before.