Tag Archives: HLHS

Raise a Glass to St. Padre Pio

My son had a paralyzed vocal cord. As an infant, he was unable to swallow milk without aspirating. St. Padre Pio reached out to us in our time of need, and this is our miracle story.

St. Padre Pio (1887-1968)

I first heard about Padre Pio from my Uncle Pat. I loved to hear stories from my Uncle; and he told me when I was about 10, about an Italian Priest and the stigmata. The stigmata is a supernatural phenomenon where a holy person becomes so united with Christ the wounds (and pain) of his crucifixion miraculously manifest on their body. St. Pius of Pietreclena (formal English) or Padre Pio (familiarly) bore the bleeding wounds of Christ for 50 years, from 1918 until his death in 1968.

I was so fascinated with the stigmata that in college I did a presentation about it for my religion class. We could choose any topic relating to any religion and I chose the stigmata. I learned about St. Francis of Assisi being the first recognized stigmatist, and that he wasn’t actually a priest, but a brother. It has been near 20 years ago, but I still remember tidbits! Incredible stories of nuns willing to suffer for the salvation of souls. And the first priest to receive the stigmata Padre Pio. I got an A, so it must have been good, ha ha.

There are so many incredible stories about Padre Pio. A Capuchin Friar, he spent most of his days in the confessional and saying the Rosary. He survived on less than 400 calories a day. While living he had many miracles attributed to him and he foretold that there would be many more after his death. When asked what he would like to be known for, he answered his devotion to the Rosary. He could bilocate, so while his body never physically left his dwelling at the San Giovani Rotunda he appeared to many people with messages. The most amazing ones are those during the war. On several occasions he appeared to aircraft personnel, so that they would not intentionally or accidentally bomb the hospital he founded to alleviate suffering. 

The leadership of the Catholic Church was suspicious of everything. They were convinced it was a hoax and Padre Pio a fraud. He was prohibited from saying Mass for many years, which greatly pained the pious priest. Eventually he was exonerated. I always believed with child-like faith all the stories my uncle told me. I always believed in miracles. Someday, I will tell my nieces and nephews about Padre Pio too. I will not just tell the stories of others, but our story.

PART 1: In 2018, my 3-year-old son Ian needed a fourth open-heart surgery. He has Hypoplastic Left Heart Syndrome (HLHS) and the surgery was expected. We travelled from Idaho to Southern California. The surgery was to connect his inferior vena cava to his pulmonary arteries via a Gortex tube, and to remove a stent and patch an area in his left pulmonary artery. It was to be a fairly major procedure taking 4-6 hours.  Ian got out of surgery, and they informed us that once they opened him up his aortic arch (the aorta being the major blood vessel off the heart) was too big.  So, in addition to the planned “renovations” the surgeons also reconstructed his aorta with human graft tissue. An aortic arch reconstruction is a procedure he had done several years before, and it is a major and complex in itself. Of course the heart has to be stopped to operate on it and the bypass machine will beat and breathe for him. My friend whose son also has HLHS texted me and tried to prepare me for the worst when she heard the news. The recovery would be really rough, and he may even comeback open chested. Delayed sternal closure is common in babies as the swelling of the heart is delayed so the surgical team intentionally waits a few days until the swelling goes down before they completely close up the chest wound. Ian had to have that twice before and it is traumatizing as a parent to witness, and a very vulnerable and uncomfortable situation for the patient. Her efforts to prepare me for the worst set me on edge. He was out of surgery, but we had an hour before he’d be settled into his ICU room and we’d be allowed to see him. It was afternoon and we’d checked in at 6am. So, I decided I needed some air and a short walk.

I was on an emotional precipice; we were trusting God- all was supposed to be well! On the verge of freaking out, I walked out of the hospital and see a round woman wearing a blue shirt with a huge picture of Padre Pio’s face and the words, “Pray, Hope, and Don’t Worry.” I recognized St. Padre Pio immediately and things went back into perspective. We were praying, we had many prayer warriors praying. We were combating all fear and despair with a fierce hope drawn out by our faith and a ferocious love for our son. And despite the many worries and what ifs, we gave them all to God. Give God your trust and he will give you his peace. We immediately added Padre Pio to our team of intercessors. The next day, my friend Karen told me she couldn’t sleep, so she just kept asking every saint she could think of to pray for Ian and for some reason she kept coming back to Padre Pio. Coincidence?

Pray, Hope, and Don’t Worry.

St Padre pio

Ian had a rough night that night. They didn’t want to extubate him since he’d been through so much, but he hated that tube down his throat and kept gagging on it. You can’t breathe around the tube you have to breathe through it. You also can’t talk. He kept gagging on the tube. He ended up gagging and vomiting and choking on his own vomit as it clogged the tube. I had to scream for help, since that room didn’t have an emergency button and luckily the nurse and RT (Respiratory Therapist) came quickly! Scary and then quite frustrating that the resident did not want to extubate him (only residents at night). My poor 3-year-old boy. Finally, around midnight he was able to lose the tube. I think it was the RT that advocated and made the resident doctor realize how lucky we got that I was right there and that they were right there to resolve the problem so quickly. Thank heaven! The recovery was miserable. Ian had to have these big chest drainage tubes, and was puking off and on for 5 days (if he ate anything, mostly on). He was in pain, depressed, no appetite and weak. It was hard to watch our typically happy boy with no smiles, no drive. After days of relentless prayers by many, Ian finally turned a corner! See The Cheetos that Pierced my Heart. At the same time our daughters back home  went to VBS (Vacation Bible School) and Padre Pio was the saint of the day! I think there were hundreds of children praying for Ian that week! Padre Pio reached out to us in our time of need, and we were so grateful. It was the beginning of a beautiful friendship.

PART 2:  Ian’s first open heart surgery at 1 week old left him with a paralyzed left vocal cord. The nerve to the left vocal cord wraps around the aorta and when they did the first surgery (which included aortic reconstruction) this was damaged permanently. Its impact on the sound of his voice was pronounced. He had this little kitten cry. It was so quiet that on the baby monitor I would hear him sucking in air if he was crying hard, but no cry! The silver lining was that we didn’t need to use the cry room at church, which made me happy to be able to avoid the germs : ) Vocal cords play a vital role in protecting the airway drinking and eating. They prevent food and drink from going into the lungs or choking/aspiration. A baby’s liquid diet was a problem.  Once it was discovered that Ian’s vocal cord was paralyzed, he was immediately not allowed to eat by mouth. He had to be fed with an NG tube at first (through the nose to the stomach) which I learned to replace in case he pulled it out, which he did the first day home! Then he eventually got a g-tube/button. Once he was healthy enough for a swallow study he passed on honey thick liquids. So, we would feed him milk thickened with rice cereal to the consistency of honey and then what he didn’t have energy to drink we put in his tube. As he got older, he could eat solids just fine, it was the thin liquids that were the problem, water, milk, juice. I would joke, we had a baby with a drinking problem!

We dreamed of the day that he would be through all his heart surgeries and stable enough to have vocal cord surgery. We hoped that we’d be able to have it done before he went to school. That he’d be able to drink out of a water fountain like the other kids and not need constant thickener. Funny sidenote: Ian stayed in the nursery at church one time and while the other kids have their allergies, gluten, eggs, strawberries, his restriction was water! Do not give him water- it could kill him! His normal blood oxygen was about 80, so anything that could compromise his lungs has a potential to be lethal.

So, Padre Pio saw us through Ian’s fourth heart surgery and now it was time to revisit the pediatric ENT (ear, nose, and throat doctor) and finally see about that vocal cord surgery! First, we needed to do another swallow study and see if he could pass on liquids thinner than honey! We figured he could at least do nectar if not half nectar.  The doctor was not optimistic. He was surprised his voice was as strong as it was given the paralysis and lack of compensation from the right cord. He also seemed surprised that he’d never gotten aspiration pneumonia. He said he didn’t think he was a very good candidate for the surgery. He said they can do a temporary surgery with botox to see if it helps, but in cases like his, where he silently aspirates (meaning the liquid goes into his lungs and he doesn’t cough like a normal person would), the chances of success were iffy. I was crushed. I asked about alternatives: none. We would just have to keep thickening everything he drank indefinitely. For over 3 ½  years, every milk he drank was mixed with yogurt/rice, water was mixed with applesauce or thickener.  The prospect of continuing that forever…ugh. I scheduled the swallow study for the next available. It was obvious in that moment: we needed a miracle. Our alternative lay in heaven. I called my friend Karen and told her that we needed a miracle and that Padre Pio was the man for the job!

It just so happened that for the 50th anniversary of Padre Pio’s death, St. John’s Cathedral in Boise was having an exposition of some of his relics. A first-class relic is a physical part of a saint’s body. It could be hair, bone, blood, etc. A second-class relic is something that the saint touched, for example wood from the cross of Christ, or a piece of Mary’s veil.  In this case they had blood and one of his habits. It was a hectic morning getting three kids ready, one off to school, and two littles with me to trek downtown before the exposition ended! I made it in time, whew, but there was barely a moment. I contained the kids best I could, got my time up close and personal, and said my heart felt prayer. St. Padre Pio, heal Ian’s vocal cord (through Jesus’ healing power).  

The swallow study finally rolls around. I’m oblivious to the fact that Padre Pio’s feast day (anniversary of his death) is on Sunday and his swallow study was the very next day on Monday! What are the chances? Thickening to honey consistency is not necessary or practical, we need him to at least pass nectar, we would be elated if he could pass half nectar. The OT (Occupational Therapist) administers the test, I’m pregnant, so I am in a different room away from the radiation. I can see on the linked computer monitor the screen, I can tell he is doing well, but I don’t know what it is she is giving him. I assume she is starting thick and going thinner. She comes in to update me. OT: “He’s doing GREAT!” Me: “Oh good, was that nectar?” OT: No THIN. My jaw drops. She tested him 12 times and 12 out of 12 he passed! No silent aspiration, no deep penetrations. He passed with a spoon, a straw, a sippy. MIRACULOUS! PRAISE GOD! That should not have been possible, but with God ANYTHING is possible!

At home, we slowly transition to thinner and thinner consistency until he drinks straight up milk, juice, water, etc.   He proudly drinks Capri Suns and juice boxes, just like the other kids! He started Kindergarten being able to drink out of the water fountain like we dreamed! However, due to the coronavirus everyone has their own water bottle : )

Happy Feast Day, St. Padre Pio! Pray for us, especially Ian, my little miracle with half a heart.

Let Abortion Break your Heart

The other day (Oct 11) the Idaho Statesmen, a newspaper based here in Boise, ran an article that took my breath away. A friend sent me the link asking if I’d seen it and it opens with this from the AP:

Hevan Lunsford, a nurse in Alabama, was five months pregnant when a doctor told her that her fetus was severely underdeveloped and had only half of a heart. She was told the boy, whom she and her husband decided to name Sebastian, would need care to ease his pain and several surgeries. He may not live long, they were told.

Lunsford, devastated, asked about ending the pregnancy. But the doctor said Alabama law prohibits abortions after five months. He handed Lunsford a piece of paper with information for a clinic in Atlanta, Georgia, a roughly 180-mile drive east.

“The procedure itself was probably the least traumatic part of it,” Lunsford said. “Most of the laws I navigated, there was no reason for them. None of them prevented my abortion. It just made it where I had to travel out of state.”

If you don’t know my story the parallels are uncanny. We also received the devastating news at 5 months that our son had a severely underdeveloped heart, only half a heart. We also named our unborn son Sebastian. Both of our sons were loved. Both of them suffered. Both of us feel convicted to be advocates for others.

“My grief is complicated so deeply by the unnecessary stigma and regulation of abortion. I can’t just be a mother grieving the loss of her son. I have to be an advocate for my son. I have to be an abortion educator. I have to be a political activist. It’s exhausting.” Hevan Lunsford.

I wish I knew more about Hevan’s son Sebastian. I wonder what would cause pain in the womb of an underdeveloped baby, and how would they know it is in pain? Or was the choice to terminate made more out of the very real fear of pain or suffering. I was surprised to learn that one of the myths of doctor-assisted-suicide is that it is often chosen in cases of pain and suffering. The Euthanasia Prevention Coalition did a documentary The Euthanasia Deception pointing out that our medical practices are generally very good at controlling pain, but it is a fear of pain, decline, and/or being a burden, that more often motivate people to end their lives. They are not in a current state of pain. In searching other articles about Hevan’s story she is quoted saying, she “took the pain upon herself so that he would not ever feel a moment of agony.”  This makes me think the baby wasn’t in a current state of pain, but that if she went through with the necessary surgeries for survival with half a heart he would be.

A couple things annoy me about the way this is presented. First off, it talks about “ending her pregnancy.” Birth ends pregnancy. In abortion what ends is the very real life of a baby that has not been born yet. In the other article, she says it was “palliative care.” She is a nurse, she should know how misleading it is to use the term “palliative care.” Palliative care is not a cure, but a medical plan to make patients as comfortable as possible as they live out the days God numbered.  It does not unduly prolong life, but the intentional termination of life is prohibited. Part of the very long definition of palliative care that many institutions use includes:

Intends neither to hasten nor postpone death, affirms life, and recognizes dying as a natural process.

In Janet Morana’s book, “Recall Abortion” she dedicates an entire chapter to fetal anomalies. Reading her book years ago was the first time I had ever heard of “perinatal hospice.” Even in situations where the outlook is grim, the baby may not make it to birth or may only survive minutes, hours, or days, there are choices better than abortion. Perinatal hospice allows babies to be loved and cherished for as long as he or she lives naturally. It is better for the unborn child not to be poisoned, shot through the heart with digoxin, or worse. But it is also better for the parents. As Morana points out, “Parents are able to plan for the birth with the support of doctors, nurses, counselors, clergy, and family. Babies are bathed, dressed, cuddled, and surrounded by the love every baby deserves, and when they die, it is with the dignity every human being deserves. Parents who choose perinatal hospice still have to deal with the grief that comes from losing a child, but studies have shown they can deal with that grief much better than women who choose late-term abortion.” Dr. Byron Calhoun, a pioneer of perinatal hospice in the 90s, discovered that when offered 75% of couples choose life over abortion.  I can’t help but wonder if Hevan and her husband had been offered perinatal hospice.

You can’t imagine the pride I have in my son, my warrior, my great adventure, my hero with half a heart.

Half a heart (Hypoplastic Left Heart Syndrome – HLHS or could have been a hypoplastic right side which is easier to correct surgically) is fatal after a few days without intervention. When our Sebastian (we call him Ian for short, get it? SebastIAN) received the prenatal diagnosis of HLHS we were given “compassionate care” as an option. Compassionate care would let our son die naturally days after birth, we could even take him home if we wanted. We chose to let him fight! Ian had his first open-heart surgery when he was one week old. He suffered, we suffered. Though I will say I don’t think he was in excessive pain, fentanyl does a pretty good job! The things he will never remember -and we will never forget! Praise God, our reality now is so far removed from the pain in the past! But in that darkness, we found a new appreciation for the light. Christ our light and our love who has prepared a place for all of us. Christ is Love personified. And those who work for Love, Truth, Peace, Beauty, and Goodness work for Christ! They may not acknowledge or recognize Him but He is all those things! Those who love Truth or love authentic Beauty love Jesus!

The story of the Lundsfords and their little Sebastian is heart breaking. It breaks my heart not only for Sebastian himself, but also for his parents. God’s plans are hard to understand sometimes. It is hard to trust a plan that involves suffering, a plan that involves a heavy cross on a little baby, a heavy cross on Mommy and Daddy. Finding out such devastating news at 5 mo pregnant gave me 4 months of agony in the garden. My constant prayer was for a miracle, if possible Lord let this cup pass, heal our son, if it be according to Thy will.

He advanced a little and fell prostrate in prayer, saying, “My Father,* if it is possible, let this cup pass from me; yet, not as I will, but as you will.” Matthew 26:39

I know that God has a plan and infinite contingency plans! I know that abortion breaks God’s heart. I know God’s heart breaks for Hevan Lundsford as well, He feels her pain too. He wants to heal her pain and extend his bountiful mercy. There are people he is sending through ministries like Rachel’s Vineyard that can help. I don’t look down on her, I look up to God and see how he wants to shower her with his grace and fill in all her wounds and holes with love.

Many Fridays during 40 Days for Life I would pray at 3pm. The hour Christ died, and darkness fell over the land. Meditating on the Passion, the Stations of the Cross, the last moments of Jesus’ mortal life on earth is sad. The lamb led to slaughter. (Though we know the happy ending!) Praying outside an abortion facility while abortions are going on like I did this past Friday is dark. It is okay to feel sad and lament, it is good to let abortion break your heart because as I’ve said I believe it breaks Jesus’ heart too. You’ve perhaps seen the recent coverage that David Daleiden’s undercover work at Planned Parenthood has exposed more gruesome details about the sale of aborted baby parts. The fetal hearts were harvested alive. It’s not just your heart that breaks but your stomach that turns. How can we combat this evil?

As Fr. Frank Pavone reminds us, we aren’t fighting for victory, but from victory. How sweet the victory Christ won for us through his own suffering! My husband and I have endured quite a few rough patches on this journey with our own warrior Sebastian and have paths unseen ahead, but we’ve been graced with God’s friendship. Now we enjoy “Joy unspeakable, faith unsinkable, love unstoppable, anything is possible!” as Casting Crown’s song Thrive puts it.

Revisit that song. Such a powerful positive light-filled message! Lyrics: “It’s time for us to more than just survive, we were made to thrive!” To spread that joy, is to make God’s heart happy! How many people can you help to heaven? Can you help others find peace on earth? Sometimes, God calls us to dark places, like abortion facilities, to bear his light, his love, and his truth. This little light of mine, I’m gonna let it shine! Ian, you are a light in the world and I will not hide God’s story in you under a bushel, and I’m certainly glad I didn’t let the devil blow you out!

Sources: same as links embedded in story.

(1) Idaho Statesman   https://www.idahostatesman.com/news/local/investigations/watchdog/article235765327.html

(2) The Euthanasia Deception Documentary- http://www.epcc.ca/dvds/

(3) AL.com https://www.al.com/opinion/2019/05/i-cant-just-be-a-mother-grieving-the-loss-of-her-son-hevan-lunsford.html

(4) International Association for Hospice & Palliative Care – https://hospicecare.com/what-we-do/projects/consensus-based-definition-of-palliative-care/definition/

(5) Fetal Hearts Harvested Alive – https://www.lifesitenews.com/news/only-hearts-harvested-from-living-babies-can-be-used-for-research-expert-tells-daleiden-hearing

(6) Casting Crown’s Thrivehttps://www.youtube.com/watch?v=qQ71RWJhS_M