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  • Writer's pictureElizabeth Leon

Happy Birthday, Sweet Baby

One year ago today John Paul Raphael Leon was born by emergency c-section. Here is his story of that beautiful day. We were blessed with 1,690 minutes of perfect love with our sweet baby. We will never be the same.

Trisomy 18
John Paul Raphael Leon

On January 4th, 2018, Ralph and I awoke to the phone ringing at 6 am. Bitter cold temperatures had canceled school in Loudoun County, Virginia. Ralph snuck into silent bedrooms turning off alarms so the kids could sleep in. He climbed back into bed with me and we held each other close, clinging to the quiet security of the three of us together, my giant belly wedged between us. “I don’t want to go to work,” he whispered. I didn’t blame him. It was freezing outside and 7 of us were staying at home, snuggly asleep. I told him how grateful I was for all the sacrifices he made for us. This was an understatement. Outside of the Lord, my husband was my safest and strongest place during this whole pregnancy. He was constantly selfless in protecting and serving me and our family, putting everyone’s needs before his own. We had cried together many, many times over our sweet baby and shared deep gratitude for the gift of John Paul Raphael’s life. Ralph was MUCH better than me at accepting God’s will and living in the moment, but I knew we were united in longing for this baby with every breath.

After he left around 7:30 a.m. I fell back asleep in the quiet house. I was curled up on my side, deeply dreaming, when I felt a pop and was awakened by a FLOOD of warm water in my bed. My eyes shot open and I was startled – what was that? As I became aware that my water had broken, I was filled with panic and terror. I jumped out of bed, standing there as the water continued to pour out of me.

“AAAAANNNNNDREWWWWW! MAGGIE!! ANDREW!!! MY WATER BROKE!! HELP!” I was screaming, my voice full of fear. No no no no no no no It's not time yet no no no not now. We had a plan in place. We were inducing on Monday. We had met with both Dr. Hassan and Dr. Wolfe the day before and we understood that John Paul Raphael wasn’t growing anymore and we needed to deliver him soon, but they both said we should have some time. A few more days would be fine. I wasn't ready to face his life and the possibility of his death.

I stood frozen by my bed in my underwear and a t-shirt, a large puddle forming at my feet as 2, 3, then 4 children appeared in the doorway, their faces mirroring my own panic and fear. “What do we do?” they asked. Adrenaline surged through me and I was frozen. I couldn’t think. I didn’t know. I could see the whole scene from above in slow motion. I was in shock and felt a complete disconnect from the reality of the situation.

“Mom! Betsy!” I heard their terrified voices. “What do we do????” I remembered all at once the medical information we had been trying to process for months: Our son had Trisomy 18. It was very possible he would not be born alive. I had polyhydramnios. John Paul Raphael wasn’t growing anymore. The placenta could fail at any time. A gush of fluid is an emergency. Call an ambulance because the baby was transverse. But no, John Paul Raphael wasn’t sideways anymore so that’s ok then, isn't it? Go to the closest hospital. No – our doctor is in Fairfax. The better NICU is in Fairfax. Wait, we had a plan. We were going to induce. My water is breaking. Do we have to call an ambulance? Is John Paul Raphael ok? My baby my baby my baby my baby. What do I do? I could not think clearly, but I knew John Paul Raphael needed me. He needed me to do this -- to find a way to pull myself together.

“Andrew, call Dad and tell him my water broke! Maggie, call Grandma and ask her to come over as soon as she can. Leah, call the doctor – I don’t know the number – google Dr. Wolfe in Fairfax.” I managed to get a grip. The water was still pouring out of me. I shouted for towels and told Andrew to tell Dad to come right home. Clare stood in my room, terrified. I tried to reassure her that I was ok. This was going to be okay. I didn’t know if I believed my own words. I knew I had to get dressed but couldn’t even figure out what clothes to put on or where they were. Maggie was calling the doula now and Leah was on hold with the OB. I called for Andrew to find the packing list on my dresser and to start trying to find the rest of the things, to call James and Nathan to help. I found a dress to throw on and grabbed a beach towel to keep between my legs. For some reason, I had to brush my teeth and Leah handed me the phone with a nurse from Dr. Wolfe’s office on the phone. She told us to head right to Fairfax. The kids were amazing and calm and did everything right to help me, finishing the hospital bags and putting everything in the car. We decided it would be faster if I headed towards Ralph instead of waiting for him to get all the way home. Maggie wanted to drive me, so I quickly hugged and kissed the other 5 goodbye. Grandma was pulling up just as we were leaving.

Despite my fear and my worry for John Paul Raphael, I felt the power of adrenaline and I was full of giddy excitement because I could actually BREATHE. With all that fluid out of me (it was still coming!) I could fill my lungs for the first time in months. I paid close attention to my body in the car – no contractions. No blood. No pain. I felt more pressure on my pelvis, but that made sense because John Paul Raphael had no more cushion in there. I was on the phone with Ralph figuring out where to meet him. We joined up shortly and I hugged Maggie tight (I could see the worry etched in her face) and Ralph hopped in the driver’s seat and we were off. It was 9:05 a.m. when my water broke and now it was 9:30 a.m. I could see fear and worry on my husband’s face, his own adrenaline in his voice. He was asking me questions about what happened and why weren’t we going to Loudoun Hospital and telling me to please put the seat all the way back and to try and take pressure off my uterus. I still felt nothing, no contractions, no pain. And no movement. Ralph called the Fairfax hospital emergency room and told them we were coming, that my water had broken and we needed a wheelchair ready to take me up to labor and delivery. That I was a high-risk delivery. I am so thankful that there was no traffic all the way in, thankful the Capital Beltway was wide-open, thankful there was no snow and ice, thankful we made it there as quickly as we did.

Ralph pulled up at the ER and rushed inside to get a nurse. I was getting nervous now, dread and fear spreading through me. I hadn’t felt John Paul Raphael move that whole time, which I tried to tell myself was normal. His giant pool just drained – he must be stunned! I whispered prayers over and over and over. When the wheelchair finally came, I got in and one attendant wheeled me to another and then we sat and waited. Ralph went to park the car and my heart was beating wildly. They gave me a bracelet and an orderly came to lead the way to labor and delivery. The ER nurse chattered about how she had never been upstairs before and I tried to keep the fear out of my voice as I told her we really needed to get upstairs quickly. At the nurse’s station in Labor and Delivery they didn’t seem to know who I was or what to do with me. I sat there for a few more minutes as someone made a phone call to reach the head nurse. I said again with even greater urgency, “I really need to get my baby checked.” They wheeled me into a room on the other side and a cheerful nurse came in and gave me a gown. She told me I could go ahead and get changed in the bathroom and then they would need to ask me some questions to get me checked in. I left the door open while I was changing and said, “ I REALLY need to get my baby on a monitor right now. He has trisomy 18.” I don’t know if she heard the desperation in my voice or not, but she responded quickly and said, “Okay, let’s do that then.”

Another nurse showed up and they got the fetal monitor out and placed it on my belly while they tried to do the straps. Not finding anything, the nurse said encouragingly that it could take a little while to find the heartbeat sometimes. A third nurse came in then as they found a little bit of a heart beat but lost it. It seemed that someone else was asking me questions and I was trying to tell them about John Paul Raphael. There were so many people in the room at this point. One of the other OB’s from Dr. Wolfe’s practice introduced herself and said that Dr. Wolfe was on her way.

For a moment I heard a heartbeat but something wasn’t right. “That’s too slow,” I said. “That must be my heartbeat.” Suddenly, I realized that Ralph was there now too and he looked at me with tears in his eyes and sadness in his voice, “No, honey, that’s his heartbeat.” Panic flooded me. It’s too slow it’s too slow it’s too slow. The monitor showed his heartbeat at only 46 beats per minute and all of sudden everything happened all at once. Everyone was talking to me at the same time. They needed me to take off my jewelry and my rings. Could they cut off my bra? What about the anesthesia? They needed me to decide instantly: did I want general anesthesia which would be faster but I would be knocked out for several hours after delivery or a spinal that would take longer to put in place but I would be awake but maybe we didn’t have that much time? John Paul John Paul John Paul John Paul. I cried and choked out the words that I didn’t know and where was Ralph and they were already wheeling me to the OR and I was going to have a caesarean section and this sweetest baby who I loved with my whole heart was dying in my womb.

I didn’t know what to do. I didn’t know how to decide. It was too much. When we were on the way to the hospital, I had pulled a wooden rosary from my purse and still held it wrapped around my hand. Dr. Wolfe had given it to me the day before at our appointment. She had gotten it from her last pilgrimage to Our Lady of Medjugorje in Bosnia-Herzegovina. It was held up by the priests there and blessed by Our Lady. What a beautiful consolation that since it was wood and not metal, I could keep it with me in the operating room. I clung to the Lord and the Blessed Mother completely.

“The spinal,” I cried. “Do the spinal. I’m sure.” And I prayed with my whole heart that it was the right decision. I clung to my rosary beads and prayed out loud, “Jesus, I trust in you. Jesus, I trust in you.” Over and over. It was all happening so fast. This was not in ANY way a peaceful delivery. I was terrified and I recognized no one and so many people were talking to me at once and where was Ralph? I had never been in a situation that was this traumatic, this dramatic, and such a profound matter of life and death. This was our child. Did all these people know how much we NEEDED THEM TO SAVE OUR BABY? Was he even still alive?

In an instant they were shifting me to the operating table and asking me to hang my legs over and curve my spine deeply. Someone’s face was in front of me holding my hands and my head. Someone was behind me sliding a needle into my back. I can’t remember if there was pain or not. I clung to my rosary and my faith and whispered my prayers aloud over and over. Jesus, I trust in you. I trust in you. It felt like I was on a runaway train, flying down the tracks with no sense of safety. Where was Ralph? Another mask appeared in front of me that said they were putting in the spinal and that I would feel touch and pressure but no pain. I was on my back in an instant and there was a drape and masked professionals by my belly. I recognized no one. But, suddenly, there was Ralph by my side in his own surgical cap and mask and gown. He was shocked at how many people were in the room, but he sat by my head reassuring me with his presence and gave me a kiss. Abruptly, I screamed loudly as I felt punched in the stomach. Panic and fear coursed through me. Ralph was afraid the anesthesia hadn’t worked as they were cutting into me, but the anesthesiologist came close and held my face in his hands for reassurance. “It’s just pressure. You’re ok. No pain, just pulling and pressure.” And then, at 10:33 a.m., there he was.

John Paul Raphael. His flesh. His body. He was so long and so blue and he wasn’t crying and he wasn’t moving. His eyes were closed and still as Dr. Wolfe laid his sweet, floppy body right up against my chest. The immediate flood of emotion was powerful. I love you I love you I love you he’s not breathing he’s not moving Jesus Jesus Jesus. Someone asked if they should take him, work on him, check him out, but Ralph said no, please wait.

Those moments are frozen in time. Our baby. I don’t even remember being able to pray. His face inches from mine. His closed eyes and adorable nose. I cupped his head and kissed his face. I drank him in. The tears poured from my eyes. I was sure he was dead. He wasn’t moving. Wasn’t breathing. Wasn’t crying. But he was here and we had waited for so long and fought so hard for this sweetest child. We knew the risks and had tried to prepare ourselves for this very moment. Ralph quickly grabbed the bottle of holy water that we had brought from Lourdes and we both baptized John Paul Raphael in the name of the Father, the Son, and the Holy Spirit. And he breathed.

He was alive! At least for this moment, John Paul Raphael was alive. Everything about the last 35 weeks and 6 days came down to this moment. Our son was here and he was alive. The joy surging through us took away all the panic and anxiety and fear that we had been living with for the last 9 months. The NICU team asked if they could take him briefly, reassuring us that he would stay in the room, that he would be close. They weighed and measured John Paul Raphael and someone exclaimed, “He peed!” They put a diaper on him and wrapped him in a blanket and put a cap on him and brought him back to my chest. Oh my sweetest baby. He was breathing and his little eyes opened a bit. You’re here. You’re here. You made it. Ralph kissed me again and we were both crying.

Trisomy 18
He's alive!

Dr. Wolfe came around the curtain after sewing me up to say congratulations. I hadn’t even recognized her behind the mask. The tears flowed and I showed her the rosary, still in my hand. I could feel her own relief that, at least for now, this story was happy. I had no thought in my head at all for how long this would last. I was completely and totally absorbed in my son because he was HERE and for this moment, he was alive. So grateful. So thankful. I was awake and Ralph and I were together with John Paul Raphael and we were both experiencing everything. JOY.

Dr. Alex Kline was the neonatologist on call that day and he came to talk to us, asking if we wanted them to take John Paul Raphael to the NICU for testing. We knew they could not do a thorough evaluation on him outside of the NICU, but we also knew that taking him there meant I could not follow. Dr. Kline said that if we kept John Paul Raphael with us, we needed to be clear about the limits of what they could and could not do for him outside of the NICU. We had put so much time and prayer into John Paul Raphael's birth plan; as tempting as it was to think the professionals could do something heroic to fix him, we understood the limits of his condition. He continued to breathe on his own, although slightly labored, wrapped up like a glow worm on my chest. It appeared that for the moment, the only thing he needed was a little oxygen. Someone got tubing and a portable O2 tank and got him hooked up to oxygen there on my chest. His color immediately changed and he was a little pink baby! A lay hospital minister came in then and asked if we wanted John Paul Raphael baptized. She was so sweet and kind that we didn’t have the heart to tell her we already did it – so he got baptized again! She was very gentle and loving with us, surely having an understanding that we were all being held in the very palm of God’s hand during these precious minutes.

Trisomy 18
one pink baby

Dr. Wolfe explained that I would be sent to a recovery room for two hours. She was somber as she explained that after the rupture of my membranes, my placenta had started to abrupt. It was pulling away from the wall of my uterus and suffocating John Paul Raphael in my womb. My instincts had been correct. He had been dying and every second counted that morning. I feel breathless when I think about all the other possibilities for those hours – even a small traffic jam could have meant we never met our baby alive. As it was, he was born without any signs of life. We have no way of knowing if he had a heartbeat upon birth, if in fact he was born still but the power and grace of baptism in Christ breathed new life into him. Either way, he was here and he was alive. Gratitude surged through me. Joy, peace, and sheer gratitude to God.

I was wheeled to recovery and John Paul Raphael and Ralph followed. John Paul was in a bassinet that could carry his oxygen. One of the nurses returned my phone and camera to us; she had given us an AMAZING gift by taking dozens of photos during the delivery and even went back to my bag to get my phone so she could do videos too. These are such a treasure to us. We knew the kids and my mom were already in the waiting room, but we needed a little more time just to be together, the three of us. When we were settled, Ralph placed John Paul Raphael in my arms in bed. He was perfect. Swaddled so tight, softest pink skin and a perfect little nose. It was so amazing to feel the complete absence of fear and anxiety. After a brutal and highly complicated pregnancy with so many unknowns, our baby was here and, for right now at least, he was safe and breathing. I was so completely full of love and peace and joy in this present moment with my sweet baby and my beloved husband, his daddy.

In terms of treatment or care for John Paul Raphael, we knew that every sign and symptom indicated he had Trisomy 18. We had asked the genetics team to take cord blood at birth to be sent for a definitive diagnosis and knew these results would take 24-36 hours. It was evident to both Ralph and me that he had some characteristics that were unique to Trisomy 18 – a larger head and lower birth weight, low set ears; his little hands, while not clenched continually, relaxed themselves into a fist with overlapping fingers. He had a small bit of fusing between a few fingers and a few toes, but nothing that looked unusual. I loved looking at him. He was so perfectly imperfectly perfect. His heart rate was great and his color was good on the oxygen, so we were just going to let this all play out in God’s time.

Trisomy 18
Meeting John Paul Raphael

After Dr. Wolfe came in to check on me, Ralph went out to get the kids. I tried to prepare John Paul Raphael for what was about to happen. “The crazy people are coming, sweet baby, and they are SO excited to meet you and love you!” And there they were, our other loves – filling the tiny recovery room that was only supposed to have a few people in it. The hospital, knowing that we were expecting his precious life to be brief, was working very hard to be accommodating. Squeals and hugs and awe and love and wonder filled the room as 8 of his 9 siblings came in with Grandma. What a glorious moment for us as we so proudly introduced our beautiful baby boy to our family. They were full of tender love and shyness and eagerness to hold you and see you, John Paul! One by one we passed him around and I could see them each falling in love with their baby brother. Clare and Maggie were so relieved that I was okay; I hadn’t even thought about that part of it for the children, the worry that their mom was being rushed off to emergency surgery.

Trisomy 18
Can you feel the love???

We have so many beautiful pictures from these precious moments of John Paul Raphael in arms after arms after arms. Hilariously, in the middle of the chaos, the recovery nurse still needed to check my belly every 15 minutes so we would just shoo the kids to one side of the bed and hold up a sheet for privacy and go right on with our gathering and loving. Our nurse did a good job being tolerant of all these protocols being broken. We didn’t care – It was only about the love and the joy and the precious gift of time.

At some point in the recovery room, Father Stephan Starzynski, the Catholic chaplain at Fairfax hospital, came in to visit us along with another priest friend. He had been out of town on a sick visit and it had taken him several hours to drive back in the bad weather. He came to see us as soon as he could get to the hospital. Since John Paul Raphael had already been abundantly baptized, Father Stephan confirmed him into the Catholic church under the name of St. Paul. We were so glad to have his godparents, Maggie and Andrew, there with him since they missed the baptism.

Trisomy 18
Confirmation by Fr. Starzynski

After Fr. Stephan left, the children drifted in and out and Evan and Travis, our future sons-in-law, each took a turn meeting John Paul as well. Maggie helped us out by getting my computer and sending out a big email blast to let everyone know about our crazy morning and that our beautiful boy had arrived safely. We were also able to get in touch with Johanna Waisley, our photographer friend, and she said she was on her way to the hospital to take pictures for us of this priceless time.

As I neared the end of my time in the recovery room, we needed to figure out what was happening next. Protocol would dictate that since John Paul Raphael was on oxygen, he should go to the NICU, but since I was still recovering and not walking yet, I couldn’t join him and we would be separated. I also couldn’t just take John Paul Raphael to the post-partum unit with me because there was not an oxygen supply in place for him there. Recognizing the delicate and unpredictable nature of his condition, Dr. Kline was able to make arrangements for the two of us to be transferred to the newly-opened high-risk perinatal unit. This floor was designed for pregnant women in high-risk situations and had an oxygen supply available by the bed that they would use for John Paul Raphael instead of me. The room was big enough to handle our clan and the floor was quiet, giving us some distance from other new mommies and their healthy babies. The doctors and nurses were willing to go to a different floor to care for us both. Sweet baby was happily resting in his daddy’s arms as we moved to our new room – John Paul even spent some time sucking on his daddy’s finger!

Babies are such an incredible gift from our Creator and newborns just inspire this sense of true AWE. Our room became Heaven on earth. The sacred holiness of these hours was tangible. None of us could get enough of holding him or smelling him or feeling his skin. John Paul Raphael loved to hold our fingers. He was always wrapped in his blue blanket and his yellow Duckie was close by. As soon as we were settled in our new room, Ralph took out John Paul Raphael’s cologne spray from Rome and gave the blanket, Duckie, and the room a good dousing. We all smelled like sandalwood. This scent can still powerfully transport me back to the holiness and beauty of those hours in the hospital.

Trisomy 18
Skin to Skin

Dr. Kline came in to check on John Paul Raphael again and we were able to get a longer oxygen cord so that we had a longer “leash” in order to pass our sweet baby around. Tia, his baby nurse, also came in to introduce herself and check on our little boy. Now that John Paul had been here for a few hours, we had to talk about feeding him. John Paul Raphael did not appear to be struggling with his secretions so there was no outward indication that he had a tracheal-esophageal fistula, one significant concern for a Trisomy 18 baby. Dr. Kline said they could check his anatomy with a nasal-gastric tube, but they would have to do that in the NICU. We decided to see if he could latch on to my breast, and if not, I would go ahead and express colostrum that we could feed him with a small syringe. We knew that many Trisomy 18 babies are not able to suck and swallow well, but we were hopeful feeding him small amounts this way would be successful. I spent some time holding John Paul Raphael to the breast but he would not latch on well. Tia encouraged us to hold him skin to skin anyway as one of the best ways to comfort and care for any new baby. This was so lovely – unwrapping our little naked baby and curling him up on my bare skin and then wrapping his blankets around us both, feeling him safely breathing against my chest. This was one of the very moments I had been longing for for months. You’re here. We are together. I have you. You are safe. You are my child, my beloved son. There isn’t anything I wouldn’t do for you. Please be well. PLEASE be well.

Our friend Johanna arrived with her camera and lots of hugs. It was such gift to have her be there and to KNOW we would have beautiful memories of these sacred moments. John Paul Raphael was still doing well so we decided to go ahead and have him off the oxygen long enough for Ralph and Tia to give him his bath – with a paparazzi of sisters documenting every moment! They brought him over to the bed afterwards and Ralph and I dressed him in his white puppy-dog gown and his new soft gray hat. Our sweet little baby in his tiny clothes! These were precious moments we weren’t sure we would ever have. Due to the bad weather, our daughter Alicia wasn’t able to get to the hospital from Virginia Beach, but before she left, Johanna was able to take a family photo of nine out of ten children, Mommy, Daddy, and Grandma.

As she was leaving, my father and step-mother arrived at the same time as my brother, my sister-in-law, and my niece, all of them driving in from Philadelphia in a blizzard! It was such an act of love for my whole family to make extraordinary efforts to be there. We didn’t know how long this beautiful child would be here, so they took that to heart and got right in the car! At the same time we got permission from the charge nurse for our daughter Leah’s service dog, Gage, to be in the room as well. It was definitely a crazy love party.

What I remember most about these hours is the love and the peace. The calm. The joy. The absence of fear. Our room was a holy sanctuary and we rested completely in this sacred space. The nurses and the child-life specialist were there to help us make as many memories as we could. We took John Paul Raphael’s footprints and handprints. We recorded his heartbeat. We clipped a tiny lock of hair and made an impression of his big toe that the hospital sent out to create a silver charm. Doctors and nurses and children and family drifted in and out.

By 10 pm it was just Ralph and I and John Paul Raphael left in the room. Our little baby was crying a perfectly sweet little bird cry and would sleep off and on and drink from the syringe. We took turns holding him close against our chests. Ralph changed his diaper. We were both exhausted. Ralph and I managed to squeeze side by side in the hospital bed with John Paul Raphael tucked between us, his little head bobbing as he worked to breathe, even with the oxygen. He looked at us deeply with his wise, newborn eyes. We spoke to him over and over, stroking his cheek and his back and the softest skin under his neck.

Trisomy 18
One Perfect Night

We had one perfect night, cocooned together in that bed, the three of us as close as we could be. Our own holy family. We hold on to that memory. One perfect night followed by half of a perfect day before your hourglass, crafted and held by our Loving Lord, dropped its last grains of sand.

Happy birthday, our dearest son. Today we celebrate and remember you, one beautiful child who weighed 4 lbs and 1 ounce and was 18 inches long. Dark eyes and dark hair and a tiny perfect nose. Conceived in love, born into love, and completely surrounded by love for 28 hours and 10 minutes. We miss you with every breath. We can't wait to hold you again. Let yourself be loved.

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