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In Memory of Patrick Randall Callahan
June 7th, 2019 - August 6th, 2019
60 Perfect Days
Welcome
Thank you so much for visiting. We are Patrick's parents, Malori and Patrick, and are grateful you are here for his story.
A Twin Pregnancy
At our first ultrasound (12 weeks) we were asked, "Do twins run in your family?"
Two heartbeats. We couldn't wait to leave the room to share the news with family. Because of a multiples pregnancy, we were brought back in the following week for a more comprehensive ultrasound with the Texas Children's Maternal Fetal Medicine (MFM) group. At the end of the ultrasound, we were informed of some abnormal findings with Twin "B". The doctors found that Twin B had short long bones (femur and humerus), a sign of skeletal dysplasia. Skeletal dysplasia encompasses hundreds of rare conditions affecting bone and cartilage growth, some compatible with life (such as dwarfism), but many more that are not. About 60% of skeletal dysplasias are lethal before 6 weeks of age. At 12 weeks gestation it was too early to know which type.
At our 20 week ultrasound, we found the thorax (ribcage area) was developing small in proportion to the rest of the body. The syndrome was confirmed after a special type of extensive genetic testing called whole exome sequencing. The syndrome was Short Rib Thoracic Dysplasia, an extremely rare type where the bones in the chest cavity severely restrict lung growth. Because there are only a handful of documented cases with his specific genetic mutation, the severity varied so we had an MRI done on his lung capacity. His lung capacity was 35%, and there were no babies that survived birth with less than 50%. We were told he would live up to 12 hours after birth. The next several months were very hard and very long.
Birth
We decided to name Twin "A" Austin Parker and Twin "B" Patrick Randall, after his dad Patrick and late grandfather Randy. Because there is no cure for Patrick's diagnosis, we opted for palliative care when he was born which meant no matter what happened, he would not be whisked away to the NICU but rather spend his entire short life in the arms of his parents and with his brother. Our family was all around for their birth. We all had one goal - to make sure baby Patrick's few minutes in this world were filled with love. The boys were born at 9:24pm (Austin) and 9:36pm (Patrick). We held and loved him and passed him around to family. His breaths were short, labored, and audible, but not distressed. He was alert and pink and full of life. And then the morning came and he was still with us, breathing independently. The nurses and doctors left us alone, reiterating that his prognosis had not changed - a gentle reminder to not get our hopes up. Our two days at the hospital went by and he was still breathing on his own. The nurses taught us how to insert and replace an NG feeding tube which helped relieve his work of breathing while eating, and we were sent home on day three. We were not prepared to bring a second twin home. We had only one car seat!
Days at Home
The night we came home from the hospital was the night we met our hospice doctor, Dr. Patrick Jones of Memorial Hermann Pediatric Hospice. This was the beginning of our relationship with a hospice team that literally saved us in several nights of panic. He explained how hospice care worked - essentially that they would visit once a week to check on Patrick and were on call 24/7. They provided all of the resources to care for Patrick from oxygen concentrators and tanks, a feeding pump and supplies, and meds although at that time he did not need any of it. A few days later we met our primary care nurse, Virginia Mendoza, who named Patrick "Prince Patrick" and became part of our family in the weeks to come.
The next two weeks were a beautiful blur. Patrick continued to breathe on his own and we enjoyed the crazy life of newborn twin boys along with our 20 month old daughter - 3 babies under 2. It was utter chaos with no sleep and no rest. We had help around the clock, but there were never enough hands. We were also moving forward with 'concurrent care' for Patrick, which is regular pediatric care (vaccines, ensuring proper nutrition, etc.) along with hospice care. Our pediatrician worked closely with our hospice doctor to ensure we were all in alignment. At our second visit with Virginia in week 2 we asked when we could pull Patrick from the hospice program because we didn't seem to need them.
At two weeks old Patrick had his first episode. He would thrash and scream and turn blue and dusky in color. This was not a typical newborn cry - he was in pain. We immediately called hospice and they walked us through the meds to use in this situation. These episodes were frequent in the following hours and were his response to a lack of oxygen. We had a pulse oximeter monitor on his foot that continuously monitored his heart rate and oxygen saturation, where you shoot for 'OSats' of 97-100%. His OSats had been dropping dangerously low to the mid 80s with each episode. That night we put him on supplemental oxygen. This is done with a nasal cannula hooked up to an oxygen concentrator; the equipment that filled our dining room previously we were now so thankful to have on hand.
As time went by and we had more good days than bad, we would push for increased care and seek out additional opinions. We met with a cardiologist and pulmonologist; both said he was generally healthy and his body was absorbing and processing oxygen normally but with increased work. We were beginning to believe Patrick could survive on supplemental oxygen until he was old enough for the VEPTR surgery, which would expand his ribcage over time and create room for his lungs to fully develop.
At 6 weeks old, Patrick woke up with a high fever and congestion in his airway. Typically under hospice care you do everything possible to treat at home and avoid a hospital visit which could lead to other interventions. We consulted with our pediatrician and hospice doctor at length on what to do and decided to go to the ER anyway. His condition had continued escalating and if he was going to make it through the night he needed special care only a hospital could provide. It was an extremely scary night in the hospital when he crashed and we almost lost him. He spent the next two nights in the pediatric ICU, receiving incredible care by the TCH-West Campus PICU team and made a miraculous recovery. We took him home 3 days after admission to the hospital and he had never been in better health.
We spent the next week living life to the fullest. Patrick was so alert and happy and family had come to spend the week after our hospital scare. His heart rate was still elevated, but otherwise he was better than ever. The next Friday was a very special day - he and Austin turned 8 weeks old and we also celebrated 'National Twins Day'. He had such a wonderful week, but late that night began having a different type of episode. We could not easily calm him this time with meds or increased oxygen. In the PICU our doctor had said that Patrick's heart was working so hard to compensate for his small lungs and if his heart rate stayed elevated it would eventually give out. We did everything possible to make him comfortable until the episodes passed. These episodes went into the following day and by the next night he was very, very tired. We knew in our hearts our time with him was nearing the end and we held and loved him every minute, even through the night. Tuesday morning, August 6th, he passed peacefully in our arms surrounded by family, how we prayed it would end.
We are forever grateful to everyone who prayed for Patrick throughout this journey. And a very special 'thank you' to our doctors and nurses for not only excellent care, support, and advice, but for always going the extra mile by showing love and compassion when caring for our baby.
Our hospice team: Memorial Hermann Pediatric Hospice. Our nurse Virginia Mendoza, Dr. Patrick Jones, and Nelly. This team guided us on how to care for our baby in the toughest times.
Our pediatrician, Dr. Annie Kerr, for advising us and advocating for Patrick during our trip to the ER and providing outstanding care for Patrick as we pursued concurrent care. She let us hope for him and had hope herself.
His cardiologist, Dr. Emily Lawrence, who also advocated for us and got us in with a pulmonologist within a week of seeing us. She was extremely kind to us had a strong sense of urgency for his care, despite his terminal diagnosis.
The Texas Children's West Campus PICU team for getting him through the hardest night of his life and giving us one more beautiful week with him at home.
If you ever run across a family dealing with bad news in a pregnancy or one who has received a terminal diagnosis for their child, please send them to us.
Malori & Patrick Callahan
Copyright © 2019 Patrick Randall Callahan - All Rights Reserved.