I grew up in suburban Middletown, New Jersey, one of four siblings born into a strict, working class Catholic family. After graduating from Kean College, I began a successful sales career at MCI and for many years that was my focus.
After several suspicious pap smears and reassurances from my doctor that everything was fine, I opted for a second opinion. At the age of 29, I was diagnosed with stage 3 cervical cancer. I spent the next thirty days in frantic consultations with multiple specialists for additional opinions, but all the diagnoses and prognosis were the same. It was inevitable that I would have to undergo serious surgery that would preclude my ability to ever carry a child. I was devastated but, thankfully, had a compassionate oncologist, Dr. Thaddeus Denehy, who introduced me to the world of infertility, a world that would now become my life. One of the things he did was introduce me to Tara, a former patient. Among other words of wisdom, she told me, “buy the smallest bikini possible and get tan lines. Tell Dr. Denehy to stay within the lines when he cuts and to save your ovaries”. On July 2nd, after surgery, I awoke to Dr. Denehy telling me “you’re a pain in the ass but I stayed between the lines and I saved 1 ½ ovaries”. There was hope.
I went back to work and re-dedicated myself to my sales career at MCI. I became engaged and bought a home, however, the engagement was called off before the wedding. At this point, with fertility technology having advanced, at 37 years old I made the decision to freeze multiple eggs, along with sperm from a donor, so that I might still be able to fulfill my lifelong desire to have a child.
In the meantime, I reconnected with Ode Pritzlaff, a high school sweetheart! We had both gone our separate ways and while my life had taken some difficult turns, Ode too had been through his own, having been recently separated. We began dating and quickly fell in love. Ode already had two beautiful daughters but was excited about the possibility of having a child with me. We made the decision to go forward with a pregnancy, and my sister-in-law Colleen made the extraordinary offer to be the gestational surrogate. In June, 2013 we received the wonderful news that twin boys would be due on Valentine’s Day, 2014.
The Setbacks Continue to Mount
We were thrilled but our happiness was dampened when I found out that my employer provided no benefits for gestational surrogacy. Happiness turned to shock which turned to panic when appeals for coverage were denied and we were responsible for all costs incurred by the pregnancy. We made the decision to sell our house to have money available, but since the house was built at the height of the NJ real estate market and sold during a downturn, we suffered a huge financial loss.
While all of this was happening Ode, after a series of debilitating headaches, was diagnosed with a terminal, inoperable and fast-growing brain tumor. The prognosis was two to four years. He immediately started chemotherapy and radiation treatments. I was numb from all that was happening, but I kept it together for the sake of my family.
Joy Turns to Deep Loss
On November 19th, Colleen went into pre-term labor and delivered Jude (2lbs 4oz) and Thaddeus (2lbs 1oz). Although small, there were no apparent issues with either baby. In keeping with a promise I had made to Dr. Denehy, the boys were both named to honor him. Dr. Denehy was named after St. Jude of Thaddeus, by his mother who had prayed to the saint during a time of personal need.
Thad was the weaker of the two boys and on a ventilator. When the decision was made to remove and allow him to breathe on his own, complications quickly arose. Although doctors made the effort to put him back on, the damage had been done and he died of a pulmonary hemorrhage while in my arms. We were devastated but knew we had to be strong for the sake of our other son, Jude.
In the meantime, Jude was progressing well, and we were told he would go home at the end of December. I left North Carolina to travel to New Jersey to plan for Thad’s funeral. On the day that we were to have buried Thad, we were given the news that Jude had a rare and serious tumor in his abdomen. We were airlifted to Children’s Hospital of Philadelphia and chemo began immediately. The situation took a terrible turn, and on May 21, Jude died of an infection.
I had lost two babies, been forced to sell my home, was heavily in debt and in love with a man with inoperable brain cancer. I had reached a very low point, took a disability leave from work and was struggling to make sense of it all. During the time I was on leave, I was demoted and then fired. I retained an attorney and filed suit against my employer and, as of this writing, there has been no resolution.
Rebuilding our Lives and Counting Our Blessings
Once I came out of the fog of all that had happened, I realized how important Ode was in my life and the year after the loss of the boys was spent traveling around the country looking for effective treatment. Luck finally visited us and Ode’s tumor stopped growing. At this point, we decided we wanted a child. We were turned away for adoption because of our financial and health issues so once again we opted for a surrogate pregnancy. On May 28th, 2016 Ode and I were married, and on June 7th, Carrington Grace was born. She is now a beautiful, healthy, happy one-year old little girl and the miracle our family needed.
When I was first diagnosed with cancer, it was devastating for me but I had the financial and emotional support needed to get through. Because of my experience, I wanted to help other families that struggle with the issues that result from medical crises. I was determined to “do good after bad”. Encouraged by a close friend, we worked together to create the Hope for Children Foundation of which I am Co-Founder and Executive Director. HFCF is a registered 501c3 comprised of a group of professionals, entrepreneurs and parents working together to raise funds to make a significant, positive difference in the lives of children. HFCF raises money that is used either to assist families directly or to support organizations that provide support. To date, we’ve raised over $3m for children and families in need. 100% of the proceeds for HFCF go directly to the cause.
My life has taken many twists and turns and is so very different from what I imagined for myself when I was younger and envisioning my future. I lived through the depths of sadness through illness and death of my beloved sons Thad and Jude. Yet, I have also experienced tremendous happiness when I reconnected with love of my life and we were blessed with our beautiful Carrington Grace. Throughout all that my family and I have been through, we fought to persevere just one more day, one day at a time, because the alternative was to give up and I just could not do that. I still have issues that I’m passionate about and will continue to fight for. I experienced firsthand the inconsistent nature and difficulty of navigating surrogacy laws. I’ve also suffered from a workplace that did not support me when I needed it most.
My sincere hope is that by sharing my story, I will give hope to others that there can always be some light that comes from the very darkest of days.
Attorney, Mother, Autism Advocate. Ilene Lainer’s Journey Creating Innovative Programs for People with Autism