Learn About Louise
Louise was diagnosed with 1P36 Deletion Syndrome -- a very rare chromosomal abnormality -- while she was in utero. Even at 20 weeks, she showed significant brain and heart abnormalities. The first advice I was given was to have an abortion, as the doctor explained to me that 60-80% of people with these abnormalities would be severely disabled, if they survived at all.
The pregnancy and birth were surprisingly easy given how many challenges Louise was facing, and she was sent home after 8 weeks in the NICU. Our pediatrician likes to joke that we ran a mini ICU in our house, and Louise was back just a few weeks later to have open heart surgery. After being home for just a few months, we rushed back to the ER when Louise couldn’t keep her oxygen saturations up with max support at home.
That began a very long and bumpy journey bouncing around the hospital – Louise had two back to back pulmonary hypertensive crisis events that left her on a litany of controlled substances, unable to come off the ventilator. When her blood pressure dropped to 30/10 all we could do was sing worship over her bedside all night. We were told multiple times that the doctors were doing everything they could. When our doctors suggested a trach, we begrudgingly agreed, and faced a slew of new emotions as we tried to imagine what life would look like for our little girl. The trach turned out to be the lifeline she needed to survive, and after extensive training we got to take Louise home.
By the time she was 10 months old, she had spent 8 of those in the hospital.
Living in the hospital with your baby is an extremely emotionally taxing situation. I’m not sure there are adequate words to best describe the pain, fear, and anxiety.
If you’ve ever worried about your child, you know the best way to can describe it is that every day is the worst day of your life. What should be a joyous time spent getting to know your new little one is instead a time filled with fear, dread and agony. All I wanted every day was for someone to tell me it was going to be okay. That Louise was going to be okay. But no one could.
To make matters worse, during this emotional beating, as a parent you are thrown into the world of advocating for your child. But… how to advocate when your understanding of the human body is limited to 9th grade biology (as mine was!)? And then there’s the issue of insurance and applying for Medicaid and all the other social services that could possibly be available to us. At that moment in Louise’s life, our family was thrown into whirlwind of administrative responsibility, emotional upheaval, and medical information overload. You’re asked to make the most important decisions of your child’s life while trying to understand the doctor-speak AND sit on hold for upwards of seven hours with government agencies. And that’s on top of the regular stuff – the feeding, loving, cuddling and bonding with your baby.
It’s a near impossible task that stretches even the strongest.
Hospitals can provide a lot of resources but they cannot parent. Their number one concern is to keep your child alive, and anything else falls squarely on the shoulders of parents. Figuring out who to call, when to call, what to apply for, what documents to provide … that’s all on us. Getting Medicaid approval? Good luck calling 311. Finding a qualified nurse to take care of your child when you get home? It’s the wild wild west. How about what therapies would be best for your child? That’s on us too. Once your child is stable (hooray!) you’re sent home with very little guide on how to parent this very different child. You can imagine how difficult this would be for any parent, much less a parent with other children, a full time job or a less stable home environment.
We’ve spent the last few years amassing our resources to make the transition to home --- from surviving in the hospital to thriving at home – much easier for parents. These are the resources and guides we wish we had had!
Today, Louise is living her best life every day. We aren’t sure what the future will hold for her – how long she will be here with us or what she will be able to achieve. But we’re committed to giving her every available resource to help her reach her God- given potential! And it is our passion and purpose to help others who are in the same shoes we once were in.
When Louise was first born, there was a question in my heart of why God had chosen to create Louise the way that He did. I was scared, but I need to admit that I also felt shame. Shame that my daughter was not going to be perfect in the eyes of this world. I hate to admit that, but I share that only because of the radical transformation God has done in my heart through our struggles with Louise.
Today, I am bursting with not only pride for her, but an incredible passion to help others on similar journeys. Now, there’s no question as to why God created Louise different. Her life’s purpose is to encourage others, and to share the hope that we have in Jesus. And I wouldn’t change her for one second!
Louise was born in March 2021. She loves her thumb, chocolate ice cream, and watching Marvel movies with her Dad. When she’s not busy in therapy, she enjoys going to Disney World, snuggling and long walks. Louise has a G/J tube for feeding and medicine, and a trach to help with her breathing. She loves to meet new friends, go to the movies, and to prove the medical community wrong.
Katie is Louise’s very proud mom!
When she’s not being Louise’s administrative assistant 😊 she loves to read fantasy novels, eat sushi, and needlepoint.
