When my fiancé and I went in for our routine 20 week ultrasound, we were ecstatic to find out the sex of our beautiful bundle of joy. Being so naïve at the time, my biggest fear was that the baby wouldn’t be positioned in the technician’s favor and we wouldn’t be able to find out the gender. Boy was I snapped back into reality quickly when the technician brought in the doctor, who told us “there is a major problem with this pregnancy.” Before he explained the problem, he made us vow that we would not go home and type the words we were about to hear into Google, because what we would find would scare us to death. My heart sank as he proceeded to point out our baby’s enlarged bladder. He took us into a consultation room and began explaining that our baby has a diagnosis called PUV (posterior urethra valves). Ultimately, there was little to no amniotic fluid. He told us we had three options. The first was to continue with the pregnancy as is, which would inevitably lead to the death of our baby, whether it was in utero or post birth. The second option was termination, which was the hardest thing we’d ever heard. The third was a long shot, but fetal surgery, depending on whether or not our baby met certain criteria necessary for surgery. We told him we would do anything and everything to save our baby’s life, and thus began a very long journey.

I had three amniocentises done over the next three days, and we sat on pins and needles for the next week, awaiting the results. I had never experienced the kind of uncertainty and pain we were facing every moment of everyday. The results would tell us his gender (it‘s a boy!), his electrolytes level (indicating kidney function), and whether or not there were any chromosome abnormalities. The results came back and he was a candidate for surgery! That was the best news we’d ever gotten in our lives. During that time was when we came upon the Fetal Hope Foundation. Georgi was able to guide us in the right direction with how to proceed, offer immense support, and share her son’s success story with us. Without a doubt, we would have been a lost without what we now refer to as our “LUTO family.”

At 23 weeks pregnant, I flew up to Philadelphia to see Dr. Johnson’s team at Children’s Hospital of Philadelphia. They performed an amnioinfusion on Tuesday and placed a shunt in our son’s bladder on Wednesday, all thanks to the miracle of fetal surgery. We were incredibly confident with his team on our side, we would have a baby boy in our future.
We had weekly follow ups with our doctor here in Sarasota. During one of our visits, he found the amniotic fluid was back down. It was determined that the shunt had gotten pulled back in and was now draining his urine into his abdomen. We made another trip to Philadelphia where they placed a second shunt into his abdomen. Again, we had weekly follow ups with our doctor, and just like déjà vu, he found that the amniotic fluid was down, yet again. We were advised to go back to Philadelphia and stay there until delivery. At this time, I was 31 weeks and they were not comfortable delivering him that early. I was put on strict hospital bed rest, and they watched and waited. Each week was valuable and critical for the development of his lungs. At 34 weeks on the dot, I went into premature labor.

Elijah Lee Hyde was born on November 21, 2009. He was put on the oscillator for ten days, the ventilator for another five, and underwent extensive care in the NICU at CHOP. He had his first surgery for a vesicostomy at 11 days old. We were experiencing some of the most beautiful moments and some of the scariest moments of our lives while he was in the NICU. Sending your newborn baby into surgery was definitely on that list of “Scariest Moments.” Dr. Zderic and his team of urologists found that Elijah’s bladder was in much worse condition than they were hoping. Rather than performing a routine vesicostomy, they resorted to doing a double barrel ureterostomy, which they are hoping gives his bladder an opportunity to restore itself. He was in the hospital for a total of 6 weeks, a much shorter stay than we’d expected.

Today, we’re thankful for Dr. Hill, our doctor at home, who guided us the whole way and was informed enough to know fetal surgery was an option. We’re thankful for Dr. Johnson, Dr. Bebbington, and so many of the other doctors at CHOP, whose motto was “No Fetus Can Defeat Us!” We’re also thankful for the Fetal Hope Foundation. In a time when we felt clueless, hopeless and lost, we found hope and peace through the many others who have experienced fetal distresses. We found Fetal Hope on the day we found out about Elijah’s condition, and have made it a huge part of our lives since. Through Fetal Hope, we have found what we refer to as our “LUTO Family”. Now, we are blessed to have a beautiful, happy four month old who is not easily deterred. All those moments we feared we might never have, we are having now. Pushing our son in his stroller around the park, watching him sleep in his crib, witnessing his first smile, his first laugh are things we will never take for granted. Though our schedules are hectic with constant appointments and incessantly refilling medications, life as parents to a LUTO survivor is beautiful and blessed.