Devoted husband and father Rory Mele is a brand new addition to our site! Rory’s articles will focus on a variety of topics: raising an infant daughter with Down Syndrome, coming back to the Church after excommunication, and finding joy in the gospel of Jesus Christ. We are so excited to have Rory, and we know you’ll love his articles as much as we do!
Her diagnosis was a surprise to us. The minute she was born, five weeks early and dark purple, my wife knew that something was wrong. Rose saw the pronounced features of our baby’s face and knew that her color was not right.
Maybe it was the two hours of sleep that I got before my wife’s water broke, or the obligation to inform my command team that I wouldn’t be to drill that morning. Maybe it was telling family that the baby was coming too early and we didn’t know what to expect, or maybe it was the panic of not being ready and trying to find a sitter for our older kids at three in the morning. Maybe it was because all babies’ faces never look right after being squished through the birth canal. Whatever the reason, I didn’t notice any major red flags when our daughter Madison finally arrived. I heard her start to cry and I was relieved. For at least 30 seconds, I was relieved.
Then I noticed her color.
Then I followed the nurse to where they were doing the initial tests, such as her temperature.
Then I was pulled aside to hear, “We went to do a rectal exam to take her temperature, and she doesn’t have an anus. This is a common symptom of children with Trisomy 21, or Down Syndrome, so we will need to order some tests. Come with me over to your wife so that we can talk to her about genetic testing to receive an accurate diagnosis.”
I wasn’t shocked, I wasn’t panicked, I wasn’t afraid. I wasn’t much of anything except in the moment.
We told Rose and then I watched as my family began to get split apart. Madison went to the NICU downstairs to prepare for transport to a better facility. Rose stayed at the hospital until she could be discharged, which would happen later that night. (At 4 pounds and 15 ounces, Madison was too small to cause Rose any major damage.)
“It’s gonna get worse before it gets better,” echoed the words of a close friend and member of the high council that sat in on my disciplinary court. He counseled me to be prepared for harder times. Seven or eight months after being excommunicated and expecting Satan to push every opportunity my way, things were still so good… Until this moment. This moment when I couldn’t even bless my own child, who was in need of a priesthood blessing. This moment when I berated myself for not being ready for my family when they needed me the most. This moment when our whole life would change, and we would be on another wild adventure that wasn’t planned.
It had all been planned out. Madison would arrive healthy, then I would get readmitted to the Church through baptism, and then I would get deployed with my unit, and upon arriving home, I could apply for the restoration of blessing ordinance. From there, I would take my family to the temple to have Lyla and Cooper witness us being sealed to Madison. It was all planned perfectly, down to the very timing. And then she came early; she came with complications. My deployment order would eventually be cancelled so that I could focus on and take care of my family. All of this was going through my mind as I waited for those who could exercise the priesthood to arrive.
I told the nurse that Madison couldn’t be moved until our bishop and executive secretary arrived. They offered the chaplain, but I insisted that we needed to wait. The bishop and executive secretary arrived, blessed her and comforted me, and then Madison was transported to another local hospital with a better equipped NICU.
I went back upstairs to update Rose and then passed out on the couch, overcome with fatigue and emotion. As soon as I woke up, I felt like the worst father. What kind of father just lets his daughter leave to another hospital without following one car length behind? Rose comforted me and urged me to go, so we kissed and I left my wife there alone with her own fears and emotions.
In the 20-minute drive between hospitals, my mind flooded with confusion. “Your baby is perfect,” the OB had said during each sonogram. “All of her tests came back negative and her heart sounds great.” I thought of Rose at the hospital all alone. I thought of Lyla and Cooper, who were being watched by some close friends, the father being our faithful home teacher. I tried not to cry as I recalled my 5-year-old, Lyla, at 3:30 am ask through alligator tears, “But she’s early… Does that mean she’ll die?” and my exhausted emotional response, “She might be sick, but the doctors will help her.” I squeezed her tight and left her to cuddle with our friend as I rushed back to the hospital to assist Rose through the birth.
My mind raced until I got up to the NICU, scrubbed up, sanitized, and finally got to sit down and hold Madison. I texted Rose to assure her that I had arrived, and I updated her on our baby’s status. Then I took the opportunity to softly sing my baby that song… The one that I sing to all my kids. The one that I have been singing to them since the day we became parents. The song that would take on new depth and meaning with this little sweetie.
“We all come to earth the same way, trailing glory as we come,
And we’re placed in the arms of those who, will give us love and hope.
From the day of that first birthday, to the day we go back home,
We’re a part of someone’s family, we’re not meant to be alone.
From father to son, from mother to daughter,
We can teach them of the One
Who will bring us Living Water.
But words that we say don’t shine near as bright as what we’ve done.
It’s reflected in the hearts and in the eyes
Of our daughters and sons.”
It all happened so quickly. By day three, Madison had a colostomy surgery so that she could expel intestinal waste since she didn’t have an anus. She would have a colostomy bag for the first year of her life (or longer), but with a few operations they could build her some new plumbing. Even up to this point, I wasn’t panicked. The Down Syndrome diagnosis wasn’t a surprise to me because of a very direct line recorded in my patriarchal blessing. In my late teens, when I read that line concerning my children, I received a confirmation by the Spirit that I would have a child with Down syndrome. The impression stuck with me for years, but I always wondered if that was my own imagination or if it was the gift of knowledge. So I was never really panicked…
…until they did the EKG and the ECHO and her cardiologist sat us down to tell us what was going on with her little ticker. We would learn that not only do 50% of children born with Trisomy 21 have a congenital heart defect, but that Madison was of the 5% that had both Tetralogy of Fallot and an atrioventricular septal defect, commonly known as an AV canal or common valve. This basically meant that she didn’t have the vertical wall dividing the left and right chambers of her heart—so instead of four chambers and two valves, she had two chambers and one valve. To complicate it further, she also has Tetralogy of Fallot, which deals with the defective artery placement. Her blood would mix, and due to the shrinking of her pulmonary artery, she wouldn’t get the necessary blood flow to her lungs.
We watched her struggle; we watched her turn blue. We were constantly alerted to her oxygen saturations dropping as the monitors seemed to incessantly remind us that our beautiful little girl was ill.
I didn’t panic with the Down syndrome diagnosis. I was okay with temporarily changing bags instead of diapers.
…but to hear that major heart surgery on our infant daughter (while she was on bypass) was a necessary step to sustain her life? That began to sting my emotions.
After returning home to relieve our babysitter, waiting for my mother-in-law’s arrival, and getting some much needed sleep, I found myself on the interstate heading back to OP Regional Hospital the next morning. Before I was even halfway there, I found myself pulling off onto the side of the road, sobbing, praying that God would be mindful of our little girl and promising Him that we would do everything in our power to take care of her.
Since that desperate prayer on the side of a busy interstate, I have found way more joy than I have pain. The Lord had “also [given us] strength, that [we] suffered no manner of afflictions, save it were swallowed up in the joy of Christ,” as He had done with Alma and his missionary companions in Alma 31:38.
This strength and joy followed us through 48 days in two separate hospitals (with two heart operations at St. Louis Children’s Hospital), having to be away from our other two children, getting readmitted into the Church through baptism and confirmation. It followed us through her major heart repair and into surgeries that are repairing her plumbing so that she can defecate just like all the other kids. I can honestly testify that life’s lessons are unique and that “all these things shall give thee experience, and shall be for thy good.”
To be honest, I still don’t see the Down syndrome. I don’t see the heart problems. I don’t even see the hours of therapy, the excessive medical expenses, or the hours of sleepless nights. I see my older two children dote over their cute, little “tweetie pie” (sweetie pie), who they lovingly call “Miss.” I see the many sacrifices her mother makes on her behalf, down to a very extreme diet. I see the million-dollar smile of this million-dollar baby who looks deep into my eyes anytime I’m holding her, and all I can prayerfully say is, “Thank you, God!”
Rory is a recently returned member of the restored Church after years of semi-activity and excommunication. He is a husband and father to three, and an advocate to his infant daughter with Down syndrome, congenital heart defects, and other disabilities. He gained a love of writing as a trained Public Affairs Officer for the U.S. Army, and a love for the plain and simple doctrines of the Church through enduring hard things.