This journey did not start today, or yesterday; the road for us began
January 11, 2008, the day Vanessa and I met in Ann Arbor, Michigan. We wed in July 2012 with big dreams of
building our careers and settling in a house that would become a home to raise
our children. We have since developed
our careers and settled into a house that has become a home, but one thing
remains out of reach in a distant fantasyland—children.
Our struggles with
having children started back in early 2014 when we began talking about the “birds
and the bees” at the dinner table. Satisfied
with a perfectly melty grilled cheese and a bowl of tomato soup our hearts
filled with unsurmountable warmth and joy; we began imagining how amazing life
would be. In the fall of that year, we
began attempting for the extraordinary feat of conceiving on our own. We struggled for months and with much
frustration, we decided to seek guidance from a physician that specialized in reproductive
medicine. Months followed with an
assortment of protocols of fertility cocktails and to no avail. A year of these “experiments” and struggles
lead us to IVF (In Vitro Fertilization), an invasive option for many couples
that battle with fertility issues. This
option we honored also carried a lot of stress of taking additional fertility medications
as well as timing injections prior to the hopeful egg retrieval. What felt like an eternity, the egg retrieval
occurred, a few days passed for the results of the successful egg fertilization.
With slight despair, our fertility
doctor informed us that 6 eggs fertilized, however, only one slow developing embryo
was strong enough to be implanted. Again, the wait was on! A pregnancy test in two weeks to follow,
hopefully a miracle would take place.
Well, we walked the line with hopes another would follow suit—no line,
negative, yet another road block.
Distraught and exhausted at this point, we were left wondering if we
would ever be fortunate to have children.
We decided to take a break from what was becoming a contentious situation and roughly one year later, the seemingly improbable came true. May 2017 presented us with a positive pregnancy test, all without any assistance of fertility treatments. We were ecstatic and kept our lips sealed and well, six weeks into the pregnancy we symptomatically experienced a miscarriage. An ultrasound would follow, verifying our feeling of discouragement. Furthermore, from what was identified by ultrasound imaging, a radiologist urgently expressed concern for an ectopic pregnancy. We were informed to head directly to the emergency room for further evaluation and treatment. While sitting in the emergency waiting room, we both disclosed the information to our parents. Our name was finally called and with heavy sighs, we followed a nurse to our designated residence in the ER. After tests and expedited evaluation, emergency medicine physicians came to a conclusion, “we cannot confirm if it is ectopic.” With probable evidence supporting a miscarriage and/or an ectopic pregnancy, emergency medicine prescribed methyltrexate, a medication that inhibits cells from dividing. Thus, inhibiting the ectopic pregnancy from developing and preventing future complications. From June of that year to September, a lot of energy was dedicated to this condition. A mental and physical break was mutually prescribed from yet another exhausting circumstance.
Moving to 2018, a new year and a new you, well “us,” was celebrated! Although it was the same clinic, by our request, we sought guidance from a different reproductive medicine professional with hopes this try would grant us with a golden ticket to the world of parenthood. After some changes of fertility dosages and supplements supported by new research, we were bound and determined it would work. Like I said, “New year, new us.” It WAS a new us after all! In April 2018 we were fortunate to have another positive test. Though we were happy with the outcome, our past haunted us and solemnness poured through our veins. However, after a scheduled seven week ultrasound reviled our future child, we had to disclose the exciting news! With an enormous amount of emotion, at nine weeks we unveiled the exciting news to our parents; after time of course, we personally informed extended family and friends. As any happy couple and future parents do, at 12 weeks we started documenting weekly bump pictures with our amazing dog Shandy. With each passing week, with remarkable speed, our happiness grew along with Vanessa’s baby bump. We were on a steady track to one day receiving #1 Mom and #1 Dad coffee mugs. We were right on track until the 20 week “anatomy scan” ultrasound. During the scan, we tried to remain balanced in our emotions, however we shed tears of joy and squeezed each other’s hand to express our strength of love for each other. After the ultrasound, some time passed before a physician presented the diagnostic results with us future parents; I decided to depart for home prior to a physician disclosing the precious details. Leaving confidently, I reached the half way mark of traveling home, and Vanessa calls—urgently. With a hesitant voice recovering from her tears, she informed me that the ultrasound showed the baby’s kidneys were enlarged and were bright on ultrasound. My periphery became foggy as a stream of emotion ran through me, I had one option, make my way back to Vanessa to conceive the new world we were about to enter. Full of adrenalin, I frantically arrived and found Vanessa sitting in a small room dedicated to consultations with medical staff. Directly across a small table was the genetic counselor providing the news. It was described in fairly simple terms that the bright “echogenic” enlarged kidneys on ultrasound were typical signs of Autosomal Recessive Polycystic Kidney Disease, ARPKD. Fading deeper and complicating the discussion, ARPKD was described to us as a rare genetic disease (1 in 20,000) with mutations in the PKHD1 chromosome that is passed down from both Vanessa and I. That mountain of happiness growing concurrently with Vanessa’s baby bump dismantled to a deep valley of sorrow and frustration. At this half way mark of running a 40-week marathon, a choice given to us to terminate the pregnancy was not in our beliefs and at this point, giving up was not an option.
We have since gone through genetic testing (amniocentesis), met with Nephrology, spoken to social workers, and discovered many resilient characteristics about ourselves that have lead us to this point. Though we individually experience ups and downs, we have most importantly developed a much stronger bond as a couple. Moving forward, we do not know the future conditions the road we’ll travel however, we understand we have support from all directions to help pave a smoother path.
We hope sharing our story will enlighten you all from a distance and comfort us as we cope.
The day our path changed