A Grandmother's Journey

To look at him, you would never guess there was anything wrong…the bright eyes, beautiful smile, delightful giggle, happy disposition – all hallmarks of this sweet boy.  The doctors discuss his medical condition using terms like rare, complicated and medical mystery. We know him to be the mystery of God’s presence in our lives.  Andrew John Morrissey was born on March 27, 2006.  While every child is a miracle and a gift from God, Andrew is truly special, a daily reminder to his family of how awesome God is and that miracles happen everyday.

Andrew was born with Autosomal Recessive Polycystic Kidney Disease (ARPKD) and Congenital Hepatic Fibrosis (CHF), a relatively rare form of PKD that affects 1 in 20,000 babies and can lead to death in the first month of life.  Many babies do not live beyond 48 hours, because of underdeveloped lungs directly related to the ARPKD and lack of amniotic fluid.  This disease is genetic, with both parents carrying the recessive gene.  They have a 25% chance of passing the disease on to each of their children.

Jessica, Andrew’s mom, was hospitalized at 24 weeks and spent the remainder of her pregnancy in GBMC.  At 28 weeks, the sonograms showed Andrew’s kidneys were enlarged and the doctors, though not able to officially diagnose until after Andrew was born, felt strongly that they were, indeed, dealing with ARPKD.  Andrew was given 2 doses of steroids in hopes of stimulating lung growth.  He was delivered at 35 weeks, with the hope that his lungs would be big enough to support him, but before his growing size would lead to him crushing his umbilical cord or before he began to develop bone deformities from not being able to move with the lack of amniotic fluid.  When he was born, Andrew’s lungs were hypo plastic and he was placed on a ventilator to breathe for him.

At two days old, Fr. Lacey baptized Andrew, less than ½ hour before Andrew was transferred to University of Maryland Medical Center.  The NICU doctor thought he would probably survive the transport.

At four days old, Andrew faced his first high-risk surgery when his left kidney was removed to give Andrew’s lungs some space to expand and hopefully ease his breathing.  A baby’s kidney normally weighs about 3 ounces.  Both of Andrew’s kidneys were about 5.5 ounces each.  The second kidney was left in, hoping to secure the space for an adult kidney when transplant would be possible.  Sonograms had indicated that the right kidney hadn’t been getting any larger in the 3 weeks before the first surgery.  This was not to be, however, and the day before his one month birthday, Andrew faced a third surgery (the second one was a replacement of a dialysis catheter that was placed during the first surgery.  That catheter was leaking, making dialysis very risky).  His second kidney weighed in at 18 ounces.  (An adult kidney weighs around 8 ounces!).  After the operation, his doctor admitted to us how nervous he was going into the procedure and his fear that Andrew might not have survived the surgery itself.  Andrew has been on peritoneal dialysis since – 12 hours a day, which his mother does at home.  Transplant and dialysis are the only treatment options for kidney failure.

Andrew spent his first 5 months in the NICU.  His mom (Jessica), dad (Mike), and me (aka MomMom) visited him everyday.  After 10 seemingly endless weeks on the ventilator, Andrew was ready to move onto the CPap.  More time and he eventually graduated to the canula.

During his time in the NICU, Andrew would run a mysterious fever about every 3 – 5 weeks.  Test results were all always negative and after a few days of antibiotics, he would return to, what was for him, ‘normal’.  This cycle continued to repeat itself, so that after Andrew was discharged from the hospital in August 2006, he spent time almost every month, anywhere from 3 – 14 days, back in the hospital with the mysterious fevers.  Finally in October, we received the dreaded news that Andrew also had Caroli’s disease of the liver – the cause of the infections, which was not discernible in the type of testing previously being done.  This disease, often associated with ARPKD/CHF, has no cure.

In addition to the issues associated with lung disease, ARPKD and Caroli’s disease of the liver, as if these weren’t enough!  Andrew has high blood pressure (kidneys control your blood pressure!) and suffered a few mini-strokes and seizures before his blood pressure was controlled by medication.  He also had heart problems.  Because of his blood pressure issues, his heart had to work so hard the walls started to thicken – like any muscle builds up when worked hard. God, once again, held him in the palm of his hand and that condition corrected itself after several months, once his blood pressure was more stabilized.  Andrew also had bone disease (without kidneys, his body wasn’t absorbing calcium); bones in his arms and legs were ‘fractured’ and soft.  Again, medical intervention and God’s good grace have effectively dealt with this and in late spring of 2007, it was declared that his bone disease had reversed itself and his bones completely healed.  Andrew also has an inactive thyroid, so he takes synthroid everyday.  It is one of the 15 – 18 medications Andrew takes daily.

Andrew was also born with a strong reflux condition and gag reflex, so he wasn’t able to hold food down.  Also, being on the vent and sick for so long, Andrew never learned how to suck and swallow.  So one of his to-date-five surgeries was to do a nissen (so Andrew can’t burp or vomit) and place a feeding tube into his stomach, so that he would get the nutrition to grow.  He also had a few hernias which needed to be surgically corrected.

Andrew is a bit delayed developmentally, from being so sick, from 5 months on his back in the NICU and set back with each hospitalization, from poor muscle tone which is a complication of ARPKD/CHF.  So at 17 months, he now sits on his own, but is not standing or walking yet.  The doctors assure us those will come after transplant.  Well, the list goes on and on, but that covers Andrew’s most challenging health issues.  Andrew’s mind is sharp and you can see the understanding in his eyes.  He has learned how to communicate his wants and likes and dislikes very easily.  He is beginning to learn and use American Sign Language.   He loves people, though he is shy, especially in crowds.  He loves to laugh and is curious about everything.  He has a strong spirit, and more inner strength and courage and determination than anyone else I know.  He has fought every step of the way to live and, even at such a young age, he is an inspiration and my hero.

It has been amazing and awe-inspiring to see the number of lives this little guy has touched and how God has worked through him.  To begin with, I can’t imagine the number of lives that will be made better from his kidneys having been donated to the Research Center in Alabama.  Or the babies who will be helped by Andrew’s participation in a drug study to see which medications are most effective in treating his diseases.  So rarely do either of these centers have infants who survive to be able to participate in this vital research!  Then there are the thousands praying for Andrew – people on a daily basis entrusting him to God’s care through prayer.  And not just locally, but all across the United States and even in foreign countries, all just by word of mouth, by people asking people to pray.  I had a friend from Kentucky attending a retreat in Cumberland, Maryland.  In the course of the retreat, she mentioned the special intention of praying for Andrew, a baby with ARPKD/CHF. Other attendees on the retreat recognized his name and said yes, they too had been praying for Andrew.  Strangers to one another and yet, unbeknownst to them, united in their prayers for Andrew!  God is mysterious!  At one point when Andrew was in the NICU and had bounced back from one of his really bad times, the attending doctor admitted that something Supernatural was at work in Andrew.  He was beyond their medical comprehension.  It was all guess work on their part.  It was all trust in God on our part!  Andrew has brought the Spirit into our lives in so many ways, especially through all the people who have reached out to us with care, concern, strength, encouragement, comfort, financial support, love….

For myself, Andrew has taught me so much about God and faith.  Through him, I have felt God ever-present with us – the dark days as well as the good.  I have learned to trust God in a way far deeper and different than before.  I have also had to learn patience and that things happen in God’s good time.  I have come to know so clearly that God is in control and has some special purpose for Andrew.  I have come to understand Church in a far richer way than previously through the kindness, generosity, understanding and compassion of our faith community.   I have learned a lot about hope and the power of prayer.  At one point, asking God once again on Andrew’s behalf, I prayed, “Lord, I feel like I am always asking you for something.”  What comfort and insight from the answer, “Of course.  And that is as it should be, because you are totally dependent on Me for everything.”  With a deep sense of gratitude I have come to know how awesome God is at answering prayers!  And I think, for the first time, I really understand unconditional love.  I learned to love Andrew unconditionally.  I know that most folks want to love that way, but even with our own children and others closest to us, we have expectations and standards.  We can be happy or disappointed because of them whether or not they meet those expectations.  With Andrew, I had to learn to love and expect nothing in return, not even that he would live.

Well, the story continues.  Andrew is now big enough and strong enough for his liver/kidney transplant surgery.  In June, he was evaluated at the Children’s Hospital in Pittsburgh, world renowned as a transplant center.  That trip also started his dad, mom and me on a new journey.  We were all tested, and I shouldn’t be surprised at the mercy and wonder of God – all three were matches for Andrew.  Since his mom is his primary caregiver, it was quickly decided that it would be best for Mike and me to go on with further testing.  Many tests of all kinds and another trip to Pittsburgh proved that Mike and I are both in great physical shape and are approved as Andrew’s donors.  His dad will give a piece of his liver to Andrew.  It is amazing how God has created us!  In 12 weeks Mike’s liver will regenerate into a whole liver again and the piece given to Andrew will regenerate into an Andrew-sized liver that will grow with him.  I have been graced to be the kidney donor.  Next week, our family will travel to Children’s Hospital and on the 19^th of September, after about fourteen hours of surgery and God guiding the doctors, a whole new way life will begin for Andrew and his mom and dad.  He will still need some medications, especially the anti-rejection medications, and he’ll have to be careful about infections because of the immune suppression.  And we’ve been prepared to expect that he will eventually (possibly not for 10, 20 or 30 years if he doesn’t go into rejection) need another kidney, because while he needs the medication to not reject the organ, the medication will slowly damage the kidney.  But who knows what medical advances will be made in the meantime.  It is all in God’s hands.

Follow up:  Andrew was successfully transplanted! 

>To Read: A Grandmother's Journey Continues

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