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Former SGF Patient Describes the Heartbreak of Infertility and Loss in Touching Letter

There are so many expectations, so many expectations and so many shocks, in this life. There’s the expectation that the universe understands and supports your plans. The expectation that good things come to good people. The expectation that your story will be normal, like your friends, your family, your neighbors, like in the movies. Then there are the unexpected surprises, the shocks that turn our worlds upside down. The shock of the ectopic miscarriage. The shock of bad news at the anatomy ultrasound. The shock of walking away from the hospital with empty arms at 36 weeks and 5 days. These are the kinds of shock that language cannot adequately express, try as we may with so many supposedly synonymous words – jolt, blow, disbelief, distress, numbness, devastation, alarm, stun, astound, traumatize, stagger, outrage, appall, offend – but all of the variations combined can’t touch the pain, the grief, the desolation; sorry Merriam, sorry Webster.

For 8 years we prepared. As we grew into ourselves and one another, we built the foundation for a life of happiness together; planning, saving, living and dreaming about the future. A future that always included being a family, sharing our home and our joys, chasing the wonders of this world with beautiful, bouncing children. Stephen waited, mostly patiently, for those 8 years for me to check all the pre-baby boxes. I was so confident there was a right time and that it would be in our time; funny how little we actually control.

We were delighted with a positive pregnancy test just 3 months after all the pre-baby boxes were checked. To reveal the incredible news, I popped a single bun into the oven and asked Stephen to grab out the “rest of dinner.” The look of confusion, followed by realization and exhilaration, as he asked, “why is there a bun in the oven?” is one that I will cherish always. It was so pure, so innocent and so perfect. We lived in that feeling of warmth and anticipation until the moment that an ectopic pregnancy was explained in detail. That instruction unraveling our hopes and kicking off what would become a seven-year journey, filled with twists and turns.

As soon as my body healed, we were in a hurry to regain the high of pending parenthood. In 5 mostly short months, 3 for recovery and 2 to try, we were delighted with yet another positive pregnancy test. We were no less excited and only slightly more nervous about what this could mean. Steve held on tightly to the toddler sized baseball cap I surprised him with until we passed the 12-week mark and the possibility of another heart break. We nearly exploded with the news. The first ultrasound melted our hearts and our fears, this was it, we were going to be parents to this most amazing miracle. Breathing a sigh of relief, we planned a nursery, built a baby registry and started the daunting task of selecting the perfect name. We were swimming in love, anticipation and gratitude, 140 days of pure bliss, eagerly awaiting that next sneak preview at 20 weeks. What came was a very different look at our future.

The minutes of silence laying on the ultrasound table, awaiting the doctor’s guidance lasted for what felt like days. As the spin of the world slowed, it was immediately followed by our world spinning out of control – echogenic kidneys. The next 3 months were filled with research, doctor’s visits and prayer. We traveled the east coast from Boston Children’s Hospital to Emory in Atlanta, looking for a medical team equipped with the knowledge, tools and heart to fight for our sweet baby. Our planned c-section in Charlotte just after Christmas 2011 gave forth to unplanned labor and emergency caesarean in Greenville, SC on December 11th. Funny how little control we have.

For 7 days, the longest moments and the shortest week of our lives, we huddled at the bedside of our sweet girl with bated breath. We prayed for urine output, for oxygen saturation, and for a future. Then we prayed for mercy, for pain cessation and for answers. With the oscillating vent still, an abrupt and deafening silence permeated the room and our hearts. That perfect name so carefully selected – Emslie, a gift from God.

In the months that followed, some answers we got, Autosomal Recessive Polycystic Kidney Disease (ARPKD) and some will likely never be answered. Everywhere we turned we were faced with grief, emptiness and longing. The focus on winning in a losing game became an all-consuming obsession, but we held on with all we had to the promise of a family with preimplantation genetic testing (PGT-M) and in vitro fertilization (IVF). Everything was hurry up and wait, it was months for blood test results, months for genetic counseling, months for building a probe, months for retrieval, until finally nearly one year to the day we were transferring 3 beautiful, unaffected embryos. The pain of the progesterone in oil shots was unbearable, not to be lessened by miscarriage at 9 weeks. We couldn’t start the next round of PGT-M and IVF fast enough.

Then came a most amazing blessing – a beautiful, healthy baby girl. Suddenly our world was moving again, all of the shots, the fear, the anger and isolation, the appointments, the expenses and the pain were all vindicated. We are forever indebted to those providers.

Yet, we sought another provider that could help continue to grow our family and found a stronger connection with the team at Shady Grove Fertility. In fact, we traveled in excess of 2 hours one way to work with SGF. We were taken by the knowledge, care and commitment of Dr. Perloe and his team. From the front desk to our nurses to the financial counselors to genetic counselors and beyond, we were impressed at every turn. Not only did the process seem to move faster than it had prior and the care was outstanding, but we received insurance coverage for the first time in 3 rounds of IVF which ultimately made it possible. All thanks to the hard work and diligence of our friends at Shady Grove Fertility. Despite the disappointment of one last miscarriage, we were pregnant shortly after. In May 2017 we welcomed a healthy son, our 3rd child known to this world and 7th known in our hearts.

There are so many expectations, so many expectations and so many shocks, in this life. Despite our expectations that life would be fair or at least make sense and dreams are realized if you plan right, we were shocked that our journey, one marked by anguish, emptiness, and loss, could be so rich with contentment, purpose, and love. We didn’t choose or define our journey, the journey has defined us and now, we wouldn’t choose any differently. Funny how little we control and it’s still ok.

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