WESLEY WALSH
Our journey began blissfully. My husband, Ben, and I were expecting our very first child! I was blessed with a beautiful start to my pregnancy with little to no symptoms at all. Our families were ecstatic and we couldn't wait to become a family of three.
It wasn't until our 20 week ultrasound when our hearts shattered and found out that our precious son, Wesley, was very sick. Our local MFM doctor in Milwaukee suspected that our baby boy had a very rare condition called, CHAOS. This condition is so rare that only 50 cases have been reported since 1989. Because our case was too complex for the Milwaukee team, we were sent to Chicago to see a specialist.
After two different trips to Chicago, our diagnosis seemed unclear. It appeared that Wes had either CPAM (Congenital Pulmonary Airway Malformation) or CHAOS. The prior being the better-case scenario. It was at this time, the Chicago team had me start my first round of six steroid shots (in the bum!) in hopes to reduce what appeared to be a very large mass on Wesley's lung.
My husband and I were determined to do everything in our power for our son. I began researching and searching for families that have survived these rare conditions. I quickly learned that we must travel to one of the few hospitals with experience in these types of cases. Leaving Milwaukee and Chicago behind, we were Cincinnati Children's Hospital bound! Once we arrived, we knew we were in the right place. More tests were done and Wes was diagnosed with CHAOS--the worst case scenario. Our sweet boy's right lung was so enlarged that his left lung and heart were pushed so far to the left with very little room. He had hydrops, and severe ascites in his abdomen. It turns out he did not have a mass on his lung. Instead, his lung was filling up with fluid due to his unilateral CHAOS.
We learned Wes would have to be delivered via EXIT procedure: a C-section, where Wes would still be attached to me through the umbilical cord, and undergo a surgery to create an artificial airway for him to breathe on his own. I was ready for the EXIT and all of the other battles that came our way. We were aware of other outcomes, but were ready to fight with everything we had.
After a long day in Cincinnati, we thought we would be able to go back home until our next round of appointments, but my body and cervix had other plans. I was admitted to Cincinnati's local adult hospital because I was at risk for Mirror Syndrome and pre-term labor. Mirror syndrome is where my body starts to mirror the symptoms of the baby, which can be life threatening. In addition, my cervix had shortened to a dangerous length, and I had an emergency cerclage surgery that stitched my cervix closed. After a long, emotional trip to Cincinnati, we returned home with heavy hearts and hope.
We had several ultrasound appointments in Milwaukee before our next big trip to Cincinnati. We were eager to get back there, hoping that the updated echo, fetal MRI, and meetings regarding next steps would bring some much needed good news. Finally, at just under 27 weeks we were back on the road! After driving nearly 7 hours, we arrived the evening before our appointments were to begin. I was feeling very fatigued, nauseous, and Wes was being very active. After a meal, I was ready to get some much needed sleep. Morning came and it was time for our Fetal MRI. The MRI went quickly and we were directed to the ultra sound room almost immediately after. The larger screen was turned off, and the tech seemed uneasy. I exchanged worried looks with my husband. My world stopped in the next coming minutes. The tech told us that the doctor would be in shortly, she could not find his heartbeat. The ultrasound confirmed what the MRI had showed, our son had passed away. Everything from this point on remains so vivid in my mind. We were whisked down a private hallway--as I sobbed uncontrollably--to a room where we would have to make decisions no parent should ever have to make.
We were given the option to deliver Wes in Cincinnati or travel home to be near our support system, and local funeral homes. I couldn't believe we were making these decisions, I couldn't believe he was gone. We decided to make the 7 hour drive home, carrying my deceased son within me. Back in Milwaukee, tears rolled down my face as I packed my hospital bag for delivery. Packing for this big day is typically exciting for expecting moms. For me, it was just another cruel reminder of everything I was being robbed of. We were admitted to labor and delivery the following morning. I had an epidural to remove my cerclage and began the process of being induced. The day was long, and the saddest of my life. It wasn't until after 1am that my water broke. My epidural had run out, I was in painful labor and had to wait for the anesthesiologist and doctor to come in. By the time they arrived, Wes was well on his way. Our precious son arrived at 2:17am.
Wes was immediately placed on my bare chest, and it was right then and there that I felt a love that I had never experienced before. He showed me a love so beautiful, and so strong. With him in my arms, I felt a calmness. I was able to tell him how much I love him, I was able to kiss him, and look at his precious little body that Ben and I created. He stayed with us for the remainder of the night and into the next day. After discharge my husband and I had to go to the funeral home to sign papers allowing the funeral home to pick up our son's body for cremation. We were able to pick up Wes' urn a few days later and bring him home. There aren't any words in the world to describe what it feels like to pick up your baby's ashes. I will cherish every moment he was physically with us, while yearning for so much more. Living without him is a sadness that is indescribable and has left parts of my heart broken beyond repair.
Waking up is the hardest part of my day. Waking up and realizing this is reality, and my son is really gone. Postpartum feels so very cruel when your baby dies. Maybe I was naïve, maybe I had a million other things on my mind, but I was shocked when my breast milk came in. I woke up to engorged, painful breasts and the sting of not being able to feed my son. I wish someone had warned me, I wish someone had talked to me about donation, or how to ease the pain. It would have done my heart so good to have been able to donate my milk to babies in need. I reached out to my doctors office and they only told me how to stop production. As much as I wanted the physical pain to go away, I hated the thought of drying up because it was one of the last pieces I had left of Wes. Loss moms still have all the symptoms that moms with babies have after a stillbirth. Weight gain, hormonal changes, breast engorgement, and insomnia, to name a few. Loss moms not only lose their baby, but they lose their entire future with them. It kills me that I have to say good morning, goodnight, and I love you through prayer instead of while holding him in my arms.
