Louis' Story: A Diagnosis in Utero for Antenatal Hydronephrosis
LOUIS DOMINIC CARUSO
It was wild to me that I was pregnant again after Cecilia. She was 3 years old and I was beginning to think she would be our only living child. But in the Spring of 2017 I started to have all the signs of pregnancy, and worked up the guts to take the test.
Just 6 weeks into the pregnancy I had some troubling spotting. It started in the middle of a morning when I was doing a bride’s makeup for her wedding day. I rushed off to the bathroom after we finished and saw pink dots in my underwear. Every muscle in my body felt like it was clutched in a tight grip. I got home, showered, and wept in my robe. I told Stephen I thought I was miscarrying, and I wasn’t sure how I would go through that again.
After about 12 hours the bleeding tapered off. I kept waiting for it to start back up again, and I prayed to God saying, “if you want this child back, please give me the strength to bear it.” My morning sickness suddenly got worse and I knew the baby was living, at least temporarily. In the days following, my mind wandered constantly, wondering if the baby would be alive at our first midwife appointment. I held my breath as the nurse checked for the baby’s heartbeat, and imagined this unknown little person who I loved so much, and how incredible it is to love someone you’ve never met.
Flash forward to the 20 week sonogram. Stephen had just started an Air Force training program at Fort Meade near Baltimore, MD, not too far from where we lived at the time in Loudoun County, VA. We were living in a Residence Inn Monday through Friday to be together as a family, and I just started to homeschool Cecilia for the first time. In short, there was a lot going on.
I sat in a noisy, hot waiting room at a radiology clinic with my mom and Cecilia. I was so excited to see my baby, I barely cared that we waited 45 minutes past the appointment time. The sonographer called me in with a very distant look in her eyes, and we proceeded with the sonogram. She asked if I wanted to know the sex. I excitedly said we did, and started on some lofty explanation about how I would be happy either way, and she robotically blurted out, “Boy.” Her eyes kept darting across the screen, her mouse clicking almost nervously, and I knew something was off. She left the room and came back in with the doctor on call. After a few minutes the doctor informed me with her very thick Russian accent, that there was a “blockage in urination” and I needed to call my doctor. She didn’t explain any more than that, and I was left with my mouth wide open, not knowing how serious it was.
We left the radiology office and I googled the closest Catholic church. It happened to be a retreat center in Bethesda, MD that I go to all the time. We went in hoping to make noon Mass, because I desperately wanted to pray and surrender everything to God, but there was no Mass that day. The bookstore was open, so we went in and I blankly stared at the rows of books not knowing what was going on with my baby.
And then my sweet 3 year old Cecilia urgently ran to me and placed 3 prayer cards in my hands saying, “Can we please buy these Mama?” The first card was of St. Catherine of Sweden, patron of those who have suffered miscarriage. The second was an image of St. Catherine of Siena, my confirmation saint, next to St. Dominic, whose feast day was that day (August 8). I could not believe the coincidence, and I know it truly wasn’t one. The last was Mother Cabrini, a nun who served the poor and Italian immigrants in Manhattan. I took the cards, costing me a whopping 75 cents, and vowed to pray the prayers on the back asking their intercession for our baby every day.
I called Stephen frantically when we got in the car, and left a bunch of messages for my midwife. Long story long, the midwife had zero experience with this birth defect and sent me a bunch of articles to read, most of which had every worst case scenario you can think of. Some included partial development or lack of ears, partial development or lack of limbs, possibility of cleft lip, kidney failure, stillborn, and on and on. I cried and cried begging God. How could he allow this? How could I handle another loss? Or a child with severe special needs? I worried about finances. I worried about breastfeeding. I worried I wouldn’t get to see him smile. And then in all of my self-pity and doubt, I very clearly heard, “Stop feeling sorry for yourself. I am in control.” It was that whiplash feeling when you’re having a tantrum, throw yourself on the floor and end up bumping your head (yes I was that child). I knew God was asking me to bear my pain and anxiety with less focus on everything that potentially could go wrong. He wanted me to be present, trust Him, and not get ahead of myself.
After Stephen got home from work the next day, we went for a walk to talk things over. I told him how heavily the unknown was weighing on me. I was having endless fears of every kind. What gave me peace was the idea of naming our baby. That way, if he did not survive, he would be remembered with great devotion. We circled the field where we were walking about half a dozen times and I threw out a few boys names that were on my “list”. None of them seemed to stick. Then I just blurted out, “What about Louis- like St. Louis de Monfort and Louis Armstrong?” We had been listening to a lot of Louis Armstrong the whole Spring and Summer. And we agreed.
Since we received his diagnosis on the feast of St. Dominic, we gave him the middle name of Dominic, a great man who loved God very deeply and who had a very special relationship with The Blessed Virgin Mary. St. Louis de Monfort, who wrote books such as The Secret of Mary and True Devotion to the Blessed Mother, also had a strong devotion to the Virgin Mary. I love naming our children after great saints because they have their legacies to look up to for their whole life.
My interest in the meaning behind names comes from my deep love of language, history, and culture. I searched etymology websites for the meaning of Louis and Dominic. Louis means warrior, as it was the name of many Kings and soldiers. It has roots in French, and we went with the French pronunciation of Loo-ee. Dominic comes from the from Latin “dominicus” which means of God or pertaining to the Lord. Fittingly, this little fighter was named Warrior of God. In the weeks that followed, which were full of challenges, doctor’s opinions, and hospital parking lot breakdowns, his powerful name reminded me of God’s Divine Will, and it gave me such comfort.
Our midwife practice dropped me as a patient almost immediately after they found a specialist to assess my high-risk situation. I then called around to 5 other practices, begging them to take me as a patient. After 3 weeks of agonizing phone tag with different offices, I got a voicemail directly from a Maternal Fetal Medicine doctor at MedStar Georgetown Hospital. The doctor answered as soon as I called back, and we spoke at length about everything. She assured me she could help, and even came into work the very next day, even though it was her day off, so she could see me.
What we learned was that his condition was a rare birth defect, and possibly genetic. He had a blockage in his ureter (where the urine flows from the kidneys and out to the bladder) so he was not completely emptying his bladder. After 20 weeks gestation, the amniotic fluid that surrounds the baby is comprised of mostly their urine and only some of the hydration comes from the mother. I was insanely thirsty all the time, and then I realized it was his lifeline. I started having weekly, and sometimes twice weekly sonograms at Georgetown to check Louis’ fluid levels. Talk about getting to know the hospital you are about to give birth in! If the fluid was normal, we could go on another week knowing he was ok. If it was low, I was a candidate for an operation at John’s Hopkins where the doctors try to remove the blockage while the baby is still inside you. That surgery can be performed up to 35 weeks gestation, and as you can imagine, every week I would lay on the table praying Hail Mary after Hail Mary that the fluid would be normal. Some weeks I would clench my jaw and say in a low voice, “I trust in You.”
At 35 weeks, I had a low measurement. I was dehydrated from the long drive to the hospital, and the doctor kindly took that into consideration. She told me to come back 2 days later, and if the fluid was still low she would call John’s Hopkins to set up the surgery.
I remember visiting my spiritual director and breaking down. I felt like God was punishing me for choices I made in my life, or habits I have that I still can’t break. So many of us hear, even from the pulpit, that God takes revenge when we disobey him — sort of like the teaching of Karma that what goes around comes around. My spiritual director related a completely new idea to me. She invited me to think about suffering not as a punishment, but as a consequence of Original Sin — that choice Adam and Eve made to separate themselves from God — still affects us as biological imperfections of all kinds. She informed me that God does not abandon us or punish us, but instead he comes even closer, wishing to heal our every need. We just have to let Him into the pain. Show Him the open wound and ask for His hand to heal it. She asked me to close my eyes and imagine God holding Louis in his arms, wanting his healing more than anything else. Wanting to take away his pain, and mine.
That was the moment.
That was when I realized that my despair could turn into trust.
It was always difficult for me to fully trust God. I never felt like I could trust an “abusive parent” who promised good things but really just wanted to make life hard at every moment so as to help me “grow in holiness”. My tendency toward perfectionism always held me back too. I only wanted God to see my good side, and I would always hide the real struggles I was having because I feared it would make me unlovable, which then kept the struggles around longer. When we invite God into our struggles, we are free from them. When we hand over control and worry, we gain a childlike trust that everything will be ok in the end, even if the present moment is difficult. Though it felt like Louis was victim of an unjust fate, I had to surrender him to God, and accept whatever the outcome would be. Not only did I experience more peace after I prayed this, I also felt like I grew even more in-tune with God’s voice.
Don’t get me wrong, this pregnancy was not worry-free or fear-free (though it was gluten-free). But in all seriousness, my overall attitude toward suffering transformed when I imagined how much God wants us to be healed through His love.
2 days later when we returned for the follow-up, the fluid levels were normal and I could stop worrying about the threat of surgery. All the while, something else was complicating matters.
During the scans, the sonographer found I had something called a Dynamic Cervix, meaning the length of my cervix changed from long to short without any detectable reason. That implies that it looked as if I was ready to go into labor one day, and the next day looked like the baby was safe and sound. I had to start progesterone, but had a bad reaction to the medicine. I’m usually sensitive to medicine in general, because it contains so many additives and things like cornstarch that I’m allergic to. I stopped taking it and looked to Dr. Google. I read a few articles about how a Dynamic Cervix can be caused from a lack of Selenium and Magnesium. I began taking 200 mcg of Thorne Selenomethionine and 400 mg of Kal Magnesium Glycinate. The next appointment, the doctor praised the progesterone medication and said something about how well it was working. I informed her that I had stopped taking it, and replaced it with supplements, and she could not believe the result.
We had to meet with a Pediatric Urologist at Children’s National Hospital to discuss the plan for helping Louis after his birth. They told us that if he was unstable at birth he would be rushed from Georgetown to get immediate care at Children’s. On the flip side, if he was stable at birth, we could have up to 48 hours to spend at Georgetown before the hospital transfer. I always had Stephen with me during those appointments and he was so attentive. He asked great questions, took notes, and established a great repore with our doctors. I usually got so emotional or distracted (read: blacked out) thinking of logistics that I left those appointments with very little memory of what was said. I began to feel deep compassion for the parents of children with any medical need, who have to sit in meetings listening to medical jargon, sign release papers that relinquish responsibility of death, and see the sometimes cold eyes of a medical professional that sees only a body separate from a soul. I often wish there was more support for these families, in and outside the hospital.
Week 36 came, and it was time for my weekly sonogram. My mom usually watched my daughter for the entire day, and since I knew it would be a pretty straightforward appointment, I invited her to come with me. I figured we could go out to lunch so I could treat her for the past 16 Mondays of free babysitting.
The first appointment was with my Ob-Gyn, where I found out I was walking around 5cm dilated and without even noticing. No Braxton Hicks, nothing. We got to the sonogram, and I watched as they measured the amniotic fluid. At this point I was so used to reading the screen that I knew before the doctor came in that they were low, much lower than ever before. She said with a slight smile, “You’re having a baby today!” and added, “so don’t leave the hospital.”
More on Louis’ birth story will be shared in another post!