Disclaimer: The opinions expressed in this guest post are solely those of the author and are not necessarily reflective of Live Action or Live Action News.
When I was pregnant with our daughter, Arianna Jude, we went in for our 20-week ultrasound and were faced with devastating news. Arianna was diagnosed with three heart defects and a giant omphalocele (her liver and possibly other organs were growing on the outside of her body). She was measuring small and they told us that her condition is likely linked with a genetic condition. Following her diagnosis we were given much “education” on her prognosis and what her quality of life would look like.
We were told by three cardiologists that based on the location and size of her ventricular septal defect (VSD) that she would likely experience heart failure within the first month of life, and that we would need to start her on medication to give her time to grow — but then she would likely have to have open heart surgery within one to two months of life. When we asked if there was a chance the hole could close even somewhat before birth they all said confidently, “no, not with the way it looks at this point in the pregnancy.” In regards to her omphalocele, we were told her lungs were underdeveloped (due to her organs growing outside the abdomen) and that with the size of her omphalocele she would be looking at a hospital stay of three to six months, at least. They stated she would be intubated (100%) and likely trached. We were told she would have to receive a PICC line early on and that the chances of her receiving a PEG tube were high.
The doctors were preparing us for a lifetime of therapy and treatments. This was not including the likelihood of a connected genetic disorder and the cognitive delays she would likely be facing to accompany that.
“You do have the option to terminate the pregnancy.”
SIX times… Once was not enough. We were asked SIX times if we wanted to “terminate” our daughter.
“If you’re considering terminating the pregnancy, we just have to make the decision fast since we can run into legal issues the further along you get.” This was at her 20-week ultrasound after we had just seen her face, watched her kick and move around, listened to her heartbeat and counted her fingers and toes. This was after our daughter, Lucia (age one at the time), looked up at the screen, pointed and announced, “Baby!! Awwww!” without being given any prompt as to what she was looking at prior.
Each time we were asked, we respectfully responded with some variation of “no.” Each time, I wished I spoke up; I wished I had the courage to hang up on them, ask for a new doctor or nurse or tell them to leave the room, and to stand up and fight for our daughter’s right to her life. I lacked courage in the midst of grief. My husband Ryan and I were faced with an unknown future as fear, doubt, and despair started to creep in.
“Okay, I know this is a tough situation and SOME women just really struggle with the idea of watching their child suffer. So I just wanted to double check.” This is what a nurse said to us after we said no to killing Arianna the second time she asked.
Was I now a woman, a mother, that wants to see her child suffer? Have I been placed in that category of someone who lacks mercy and kindness? What did we want our future to look like? How on earth do we protect our children from this cross? Why couldn’t I keep her inside of me, where she’s safe, forever? The only thing we knew for certain, without a doubt in our minds, was that it was not up to us. Our future, the future of our children, and Arianna’s health were in God’s hands. The only thing I kept saying over and over in my head was, “Thy will be done.”
It took us some time and a lot of prayers to truly submit to faith. It wasn’t a simple or easy road; but it was given to us and we embraced it. Ryan and I educated ourselves, taking NICU CEUs, reading books on healing, and working to strengthen our trust and love for God. We leaned on the Blessed Virgin Mary to pray for us, since she knows first-hand what it is like to watch her child suffer. We dedicated our daughter’s name to Saint Jude, the patron of hopelessness, as we pleaded with him to pray for us as well. This hit us hard (and I mean really hard), but we were determined to fight for Arianna, to pray like we have never prayed, and to surrender ourselves to the Holy Spirit.
For a while, we accepted what the doctors were telling us. We planned for the worst and prayed for the best. I would get annoyed when I would tell my mom something like, “A prolonged stay in the NICU causes even more developmental delays aside from her actual diagnosis”, and she would respond, “Stop being negative. She won’t be there that long anyway! You need to proclaim it and believe it.” To which I would reply, “I believe He CAN heal her but that might not be His WILL so I need to be realistic.”
After reflecting on the gospels and reading the innumerable accounts of Jesus’ healings followed by Jesus proclaiming “go forth your faith has saved you”, it occurred to us that our “faith” was lacking, in that, we only believed He could heal our daughter not that He necessarily would. Nevertheless, we bombarded Heaven with prayers with the faith that “…because of his persistence he will rise and give him as many as he needs” –Luke 11:5-13.
This change in heart and spirit was not easy to obtain. It required diligence in prayer, daily attendance to mass, and fasting. We dedicated rosaries to the grace of being open to the Holy Spirit and the willingness to completely commit ourselves to Him. Then one or two days before Arianna was born, it hit me. I went to Ryan and said, “Arianna will NOT need to be intubated, she is going to breathe.” I was 100% confident of this when I went to him and he felt just as confident as I did. That confidence followed us into the OR, and at 9:17 am on July 1, 2020, Arianna cried, and cried, and continued to cry… louder and louder. The neonatologist a few weeks prior said to us, “I rarely have ever seen a baby with a giant omphalocele not require intubation in the OR and if they don’t, they will later.”
Arianna Jude was never given any form of supplemental oxygen.
It was not until 30 minutes later that I got to briefly stretch out my arm to touch her and welcome her into this world. Then, I did not get to see her again for another 4+ hours. The complete separation from my baby and receiving absolutely no update on her condition was painful, to say the least. It is a moment I never want to relive; but it was a moment to offer up and give thanks. It took a little over an hour before we even heard from her nurse. During that conversation, we were told that she was still stable but they were planning to place the PICC line soon. Ryan and I prayed the rosary for guidance and decided to push to breastfeed as soon as possible instead. After two days of debating the issue, the doctors finally said, “this has never been done before but we are willing to try initiating oral and NG feedings.”
On July 3, I was able to nurse Arianna for the first time. Without being able to hold her yet, I leaned over her crib to accomplish this. Post C-section, this was not an easy task, but it was an incredible milestone. And she surprised everyone and tolerated oral feeds right off the bat. Prior to her birth, we were told, “Maybe after a few weeks or a month you might be able to start bottle or NG feeds but you won’t be able to breastfeed her.” After this event and throughout the rest of her stay at CHOP, we heard a lot of, “This is not normal for her diagnosis; we just don’t see this happen”, and “In my 20 years of working, I have never seen anything like this.”
During our initial appointment with CHOP, my husband asked about skin-to-skin contact and two doctors said no – “you can touch her and kiss her”, and “maybe after a few weeks to a month but these babies cannot be held right away due to fear or the omphalocele rupturing.” Independence Day rolled around and the good Lord placed our baby girl in our arms.
The cardiologist came to see Arianna the day after she was born. After they completed their tests they told us that Arianna’s ASD was a size that could potentially close on its own, but if not (50/50 chance), then she wouldn’t need surgery on it until she is school-aged. Some people go their whole lives with an ASD like hers.
As for the VSD that would give her heart failure within the first month of life — it was the same size but in a completely different location. Now they were seeing the VSD in a muscular spot and with that, it will close on its own. No intervention required. The third heart defect was completely resolved. Finally the genetic tests all came back…. Negative. Arianna has no known genetic disorder associated with her condition.
We were originally given an estimate of a minimum stay of 3-6 months in the NICU, but she came home on July 11, just ten days after birth and exclusively breastfeeding. We treated her omphalocele at home and she had her abdominal surgery at nine months old. She has met all developmental milestones.
Ryan and I are witnesses to God’s works. He used our daughter to prove that, through the power of prayer and true faith, ALL things are possible. Jesus wants us to pick up our cross and follow Him so that He can tell us to pick up our mat and walk! He longs for our love, obedience and repentance, through which an abundance of graces flow! When we received her diagnosis on February 22, 2020, we felt hopeless. It did not help when the “easy way out” (the “compassionate option”) was being shoved down our throats a total of six times! Lucia Maria is our “bringer or light” (as she came to us right after a difficult miscarriage) and Arianna Jude is, without a doubt, our “bringer of hope,” as she is a strong, healthy and happy one-year-old today. Our children have both played a major role in the development of our faith and, for that, we are grateful.
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