Referrals, Delays, and Late Termination
Diagnosis: Posterior Urethral Valves
By Nathan Jack's Mom
When we found out that we were pregnant with our second child, life could not get any better. Our daughter was just 15 months old; how perfect
that the kids were going to be less than 2 years apart in age. Our family was growing and so was our love.
At our 19-week ultrasound that we found out not only that we were having a boy, but that one of his ureters, his bladder and stomach were all
slightly dilated. The technician couldn't give us this information, so when we met with our doctor, she casually reported the findings. She assured
us that in all her years of practicing, she saw this very often in boys, but only twice did it have to be followed after birth. We were advised to
return a week later for better pictures of the heart. During that second ultrasound, it appeared that the dilation had increased; again, no cause
for alarm. It was later that day that the doctor called us at home to suggest that we go for a Level II ultrasound at an imaging center "just to
make sure everything was ok."
Two weeks had gone by and although we were concerned, there was no diagnosis or cause for alarm. The baby was extremely active and growing
beautifully. The following week when I went for my Level II ultrasound, the technician spent 2 hours taking pictures, focusing on the collecting
system, but again, sat stoically and continued to tell us all of the things that were perfect with our son. When the doctor finally met with us, he
advised us that the bladder was unusually large, indicating a blockage in a ureter, but his kidneys looked perfect. He mentioned a conditioned
found solely in boys called posterior urethral valves (PUV). He also advised us not to read information posted on the Internet because we'd drive
ourselves crazy and worry ourselves for no reason. He, too, advised us to return to his center in 2 weeks to meet with yet another doctor. In
hindsight, we should have realized that there was something seriously wrong since each doctor referred to someone more knowledgeable.
2 weeks later, we returned to the Imaging Center for yet another follow-up. After hearing how great his heart looked, this doctor advised us
that we should see specialists in the top hospital in New York City to determine a possible diagnosis.
That night my husband, daughter and I drove into Brooklyn to see the top pediatric urologist in the country. Again, everything looked fine, but
we were told to come to the hospital in a few days so his team could look at our fetus.
This went on for three more weeks, and six more visits to NYC. It was a Tuesday when we finally met with the Director of OB and she informed us
that our son was very sick, and although she offered fetal procedures to increase his chances of survival, she also informed us that PUV is often
detected early in the pregnancy and most mothers choose to terminate because of the many, severe complications. But at 27 weeks gestation, termination
was no longer an option in New York State.
For the first time in eight weeks, a doctor was honest with us, and although it was her honesty that I hated, I was overcome with immense sadness.
Late termination - how could I terminate my son? If we could hold on just 13 more weeks, then we'd have him to the best doctors, and they'd "fix"
him and he'd be well.
The doctor mentioned a doctor in Kansas that, based upon this medical situation, could perform a late termination. The idea was so surreal - going
to Kansas to terminate my son; he was supposed to be born to me and complete my family. After weeks of not knowing the prognosis, but gradually
learning that this baby was so very sick, it didn't take us very long to realize that traveling to Kansas to have this procedure done was saving
our son from a brief life of respirators, dialysis, surgeries and pain.
When we arrived at the Women's Health Center, we immediately felt the compassion and understanding from the entire staff. We had a story, and they
listened. The doctor instantly connected with us and assured us that although our decision was a difficult one, he knew how sick our son was and that
the choice we made was because we love him so much and couldn't bear to put him through a short life full of pain and suffering.
The week we spent in Kansas was one of the toughest weeks of my life, one that I will never forget, nor will I choose to forget, but through my
tears of sadness, love helped us through.
We returned home just two days ago, and the pain is ever so fresh, and the memories vivid. A piece of me doesn't want the pain to ever go away
because it is one way for me to stay connected to my son. My beautiful, angelic son, Nathan Jack. Seeing him was one of the hardest things I have
ever done, not being able to watch him grow up, or call me "Mommy" is something I will always grieve over, but knowing that we protected and saved
him from an existence of hospital stays was our responsibility as loving parents.
We are forever grateful to the Women's Health Center, the amazing doctor and all staff for being our heaven when we were living in hell.