After a typical pregnancy and delivery, we welcomed Arden into our family. At one day old, we were told of her heart murmur. At 6 days, hit with the news she needed open heart surgery for a complex congenital heart defect called Tetralogy of Fallot. Arden was an otherwise healthy baby but as weeks passed, several things seemed “off” and were attributed to being a heart baby, or to medications. She slept more than our other children, didn’t want to be held, had an extreme gag reflex, feeding difficulties, vomiting and food sensitivities. Developmental milestones were missed, she had low muscle tone, and didn’t engage with her environment. She didn’t make eye contact and wouldn’t track movement. We wanted to trust doctors when they reassured us Arden would bounce back after surgery but as her parents, we knew something was different. No one could put a finger on it and the professionals weren’t inclined to dig deeper than the heart diagnosis.
At 5 months old, Arden had surgery and quickly packed on weight. We began therapy through the state’s early intervention program and thought we’d be on our way developmental improvements. (It was also at this time we pushed for a genetic testing referral.) We soon found ourselves attending 4 therapy appointments a week with few gains. One therapist noticed her poor visual tracking and suggested an eye exam. As the ophthalmologist talked to me about her vision–high myopia with significant astigmatism, even he sounded surprised. She could barely see clearly beyond 6 inches away. At 10 months old, she got cute little baby glasses and we prayed her learning would take off, but this wasn’t our magic bullet.
At 13 months old, we visited a geneticist. They ran some initial tests (that revealed nothing over 2 months) and scheduled us for a follow-up in 6+ months to determine if more testing was warranted. In the meantime, Arden’s robust weight gain came to a halt, and even declined. We pursued avenues: clipping her tongue and lip ties, engaging a lactation consultant, and adding a specialized feeding therapist, all to no avail. It was a blessing Arden’s weight continued a slow decline because we received a “failure to thrive” diagnosis triggering doctors to push harder for answers. After prayer and seeking guidance from other special needs families, we contacted genetics at Cincinnati Children’s Hospital. Within 4 weeks of that appointment, we received the Ogden Syndrome diagnosis; then 1 of 23 cases in the world according to the literature. We were left dumbfounded, grateful, overwhelmed, validated, relieved and hopeful. Our geneticist pointed us to a Facebook patient/parent support group. Hesitantly, we joined and were welcomed immediately by compassionate people offering advice, support, understood our child’s mysterious ways and sympathized with our struggles.
We’ll echo the sentiment that it’s not all rainbows and sunshine. Mental, emotional and physical exhaustion; constantly explaining your child’s disorder to doctors; dealing with insurance; persistent feeding and sleep issues; explaining your child’s differences to passersby:
Yes, she’s the size of a 1-year-old but she’s nearly 4.
Yes, she has all her teeth, she’s 3.
No, she doesn’t really speak.
No, the glasses aren’t just a fashion statement.
Oh, you think you have a family member with the same diagnosis? We want to say “fat chance” but instead, smile, nod and think “if you only knew!”
Plenty of days are hard–BUT the joy is more. Our hearts are full. Arden is a gem. She loves music, dogs, her siblings, being in the pool, and she especially loves her daddy. She’s quick to laugh, thinks it’s hilarious when people cough or choke and definitely draws attention. Our Christian faith informs the way we see Arden—as an image bearer of the God who created her. The day-to-day struggles are laced with the joys of the sweet little person she is. We trust God will use this and her for his glory. We can easily feel overwhelmed when we think too far into the future, and while we plan for what we can anticipate, we trust that God placed her in our family for a purpose. We consider it an honor to have her in our care. We treasure her each day and count it a blessing to have her in our lives.
Bernard & Margie