Joey’s Story

Today’s story features one of my favorite Heart Kids Joey Middlemiss. I did not get to know Joey or his parents until after his death last September at six-years-old, but I have been captivated by Joey’s spirit and the strength of his parents since then. Joey’s spirit and love of life shine through in every photograph. He loved The Beatles and lived each day to its fullest, so his parents started the “Joseph Middlemiss All You Need Is Love Mission” in his name. Please “like” their Facebook page to learn all about Joey and the good works that have been performed through the Mission in his name, since his death: https://www.facebook.com/JosephMiddlemissLove.

I feel so connected to Joey through our mutual love of The Beatles and to Scott and Kate due to the fact that we lost our sweet Heart Warriors within a few months of each other. I’m sure he and Lucy are rockin’ out in Heaven together. Here is Joey’s story in Kate’s own words.

 

Our worries about Joseph’s future began long before his tumultuous entrance into the world on May 31st, 2007.  Our world was changed so many months before, on a cold December morning. Professionals analyzing a 10-week ultrasound of Joseph delivered the tragic news that OUR baby had a VERY slim chance of surviving and if he did, he would have MANY life-altering “abnormalities.” All of the joyful feelings that usually fill the thoughts and lives of expectant parents were stolen from us on this day and replaced with sadness and fear.  All of our hopes, plans, and expectations for our life with our child changed forever.  Subsequent ultrasounds and fetal tests renewed some of our hope to bring a “healthy” child into this world, but we learned that doctors, tests, and percentages are not infallible.

On May 31st, 2007, our beautiful boy entered the world, fighting for his life from his very first breath.  During the time that should have been filled with tears of happiness, fear overcame us as we waited…and waited…and waited to hear that first shrilling cry of new life; a cry that was not destined to come without medical intervention.  Scott and I were not given the opportunity to hold, or even see, our beautiful little boy for hours and hours. The moments that were supposed to be filled with joy were filled with a sickening feeling of emptiness. We still mourn the loss of this most precious time.

Joey was soon labeled “medically fragile” and was whisked off to Boston to be poked, prodded, and examined by the team of “experts.” Prior to his hasty transfer, I was finally given the opportunity to hold my precious baby boy and to look into those beautiful eyes of his for a few brief moments. He instantly stole my heart, but then I felt that it was being ripped from me as he was rushed out, en route to Boston. I was forced to stay behind in the local hospital until my condition was stabilized, two days later. This is something a mother should never have to do.

A cloud of fear and uncertainty formed and shadowed our lives during the months and years that followed. Diagnoses were given, predictions were made, but none of those “experts” could quite figure out the little man who had already stolen our hearts: “We think he has…..He may not live through this episode…He may not see his First Birthday…We predict a longevity of 2 years…He may never be able to….He may never BE…This is WRONG with him and that is WRONG with him…”  As phrases like these filled our lives during Joseph’s 3-month hospital stay, all we wanted to do was LOVE the little boy that we had brought into this world.  We wanted SOMEONE to see him as we did; as a beautiful GIFT!

A brief homecoming was shortly followed by a long re-admission, but we finally took our gorgeous little boy HOME in late August.  One would expect that the cloud of fear would have begun to lift at this time, but we soon realized that the fight had really just begun. Now home with little medical, financial, or educational support, we felt more LOST, ALONE, INADEQUATE, and SCARED than ever. Medical expenses…frequent health scares…sleepless nights…dislodged feeding tubes…equipment malfunctions…the UNKNOWN future. Joseph was sent home without a clear diagnosis and NO long term prognosis. We were forced to cherish each moment and live one day at a time. Fortunately, we were not asked to do this alone.

I’m not exactly sure how it happened, but Joseph’s story began touching other’s lives and opening hearts of family members, friends, co-workers, students, school families, service providers, doctors, specialists, and even strangers. Scott and I received an outpouring of support. The dark clouds of fear and uncertainty began to dissipate as people reached out to us and held our little family, ever so gently, in their thoughts and prayers.

Joseph is now a beautiful, spirited, and life-filled three-and-a-half year old little boy. He continues to mystify the medical world as his heart condition has changed from dilated cardiomyopathy to hypertrophic cardiomyopathy, a progression that is unknown to any of his “world-renowned” cardiac specialists. As the years have progressed, new diagnoses have also emerged, making it clear that he most probably has an unidentified syndrome. Joseph has been seen by many experts in the field and his case has been presented at national genetics conferences, but NO ONE can quite figure him out.  We have come to realize that we may never have a clear diagnosis or a long term prognosis.  This is hard to accept, but we will continue to love him for who he is.

Although his cardiac status continues to be the main concern, Scott and I still struggle with the day-to-day frustrations of trying to get our little boy to eat. Feeding a child is such a natural occurrence, but it has never been easy for us. Due to the severity of his heart condition, Joey did not have the strength to eat as an infant. Subsequent years of gastrointestinal issues, structural anomalies, and continued cardiac demands made feeding a very unpleasant, and often impossible, task for him. Once his cardiac condition stabilized a bit, he underwent surgery for the placement of a feeding tube right around his 3 month birthday. Since this time, we have had a love-hate relationship with “the tube.” It has kept him alive, nourished him, and has prevented MANY hospital stays for dehydration, but we continue to struggle with feeding issues on a daily basis. Joseph has gone to “food school” for the past 2 years and has learned many new skills. There are weeks when he eats well and we are convinced that he will be “tube free.” These times are usually followed by long periods of oral setbacks, taking us on what we refer to as the “feeding roller coaster ride.”  No parent wants their child to rely on a feeding pump and high calorie formula for nutrition, but it has just become one of the many things we have learned to accept. We are here to support Joseph and provide him with the needed therapies, but he will ultimately EAT when HE is ready, just as he has done with every other obstacle placed before him.

Over the years, Joseph has revisited the hospital as an inpatient numerous times, has undergone multiple procedures, surgeries, and tests, but has faced it all with bravery far beyond his age. His love of life is evident to everyone he meets and he continues to defy the odds stacked against him. Doctors are continually shocked when they meet him, because his persona does not match the morbid diagnoses and test results that fill his VERY large hospital binder. Just last week, Joey unhooked himself from the cardiac monitors in his hospital room, picked up his beloved blue ukulele (yes…he takes this with him just about everywhere he goes), and marched through the hospital hallways playing music for his doctors, nurses, families, and fellow patients. THIS is our son. This is HIS gift!

Over the past few weeks, Joseph has had some major cardiac setbacks resulting in hospital stays and many tests. Open heart surgery was considered as an option, but careful collaboration between cardiac specialists revealed that it would not be a long term solution. For now, Joseph’s condition is being managed by the addition of some new medications, but it has become apparent that a heart transplant is most likely in his future. We are working closely with the transplant team at Children’s Hospital Boston and are monitoring him for signs of progressive heart failure. As always, it is impossible to predict when Joseph will need to be listed for transplantation. It may be days, months, or even years. Although these new fears and uncertainties fill our minds, Scott and I are working to keep things as normal as possible for Joe. He is just now beginning to realize his medical limitations and frequently asks us questions about his “special heart.” We are still learning how to give him honest answers without crushing his amazing spirit.

As we face these new obstacles, we have found that, ONCE AGAIN, we are NOT ALONE. We have been embraced by the prayers, thoughtful acts, and generosity of those in our work and home communities. We still question why we have been so blessed to receive this overwhelming support, but truly believe that JOEY has opened the hearts of so many. His presence resonates through the community as he exemplifies the essence of what it means to truly live. It is our hope that we will, someday, be able to “give back” to the communities that have supported us through these difficult years. This is OUR goal! We WILL make it happen!

Cardiomyopathy, diastolic dysfunction, high blood pressure, laryngomalacia, obstructive apnea, aerodigestive abnormalities, scoliosis, oral phase dysphagia, submucous cleft palate, velopharyngeal insufficiency…these are just some of the diagnoses attached to the name Joseph Middlemiss. They are NOT who HE is and he has proven this time after time. Joseph is a beautiful little boy who loves to play music and make people laugh. He can tap the beat of just about any song, memorizes song lyrics after hearing them once, and is always willing to “rock out” and perform for an audience. He may never be able to eat like others, speak like others, or play any of the sports that he loves to watch on TV, but he WILL continue to fight and remind all of us what is truly important. During his four years with us, Joseph has taught Scott and I more about LIFE than we had learned in the decades before his entrance into this world.   He has led us by example: savoring each day, each moment, each precious breath. Joseph exemplifies what it means to be ALIVE. For this, we love him and will continue to “fight the fight” right by his side.

(Commentary by Sara: The above was written by Kate when Joe was 3 ½ years old. Below is a timeline of subsequent events that she emailed to me.)

Joey had two great preschool years in an integrated classroom. The summer before his kindergarten year, he had a high fever for several days. The docs said it was viral and sent us home. On the 3rd day of a high fever, he began acting differently. I noticed he was more lethargic, very pale, and his hr and o2 dipped. Scott and I drove him into Children’s Hospital Boston. By the time we got there, he was unresponsive, freezing, but sweating profusely. He was breathing, but looked terrible. The ER filled with docs and they were able to stabilize him. He quickly bounced back. Docs that didn’t see him in those very sick moments had a hard time believing that he was so ill.

We stayed in the hospital for several nights, but he was jumping around a few hours later. He began to break out with a rash and tests showed that it was varicella (even though he had the vaccine). He bounced back quickly and did well. It was thought that it was the specific virus that caused so many issues, but the plan was to go to the ER to get metabolic labs done the next few times he had fever. They always came back fine.

His Kindergarten year was great. He got typical childhood illnesses, but dealt with them ok. He had a g-tube so we were able to keep him hydrated with Pedialyte when he was really sick, but he got over illnesses quite well. He maybe needed a slightly longer recovery time than the average child, but nothing too extreme.

After waiting for 6 years and doing just about every genetic test, Scott and I decided to try to give Joe the sibling that he had begged for forever! All the testing came back negative and it did not look like Joe’s cardiomyopathy or underlying syndrome (still unknown) was hereditary.

In July 2013, a 34-week fetal echo showed that our infant Jack also had cardiomyopathy. This was devastating, but Joe was our hope. He had done soooo well.

In August 2013, Joe had his best cardiac appt/echo in a while. Things looked like typical HCM with no obstruction. The heart had looked a bit more restrictive in the past, but was looking better now. Great EF, no obstruction…. looked like the next hurdle would be puberty.

Jack was born August 21st. He did well at first and only spent 6 days in the NICU. EF was 41 at birth, but later dipped to the 20s, causing an inpatient stay. Scott and I took turns in the hospital and staying with Joe. Joe was our strength. He was thriving, entering 1st grade, and doing sooo well.

In early September, Joe had a fever and didn’t feel well. We went to the pedi and he was treated for strep throat. He started antibiotics and bounced back.

On Friday, September 20th, he attended his beloved cousin’s 3rd birthday party and had a ball. He was jumping in a bouncy house, running around, and everything was normal. 

Early the next morning, he woke up and vomited. He only had a low grade fever, but I brought him to the pedi, because I knew it was a Saturday and we were more worried about JACK getting sick. I was also worried that the strep hadn’t totally cleared up. Everything looked great, but the fever got higher. They thought it was viral. All day Saturday and Sunday, he was pretty lethargic and didn’t want to eat too much, but we kept him hooked up to Pedialyte through his g-tube to keep him hydrated. His fevers would spike, but Tylenol and Motrin would bring them down and he’d act pretty normal. On Monday morning, he woke up really agitated. Nauseous. NO Fever. He looked paler than he had, so I took his pulse and checked his O2. Both were normal. Scott decided to stay home from work and climbed in bed with him. I was getting Jack ready for a return trip to Children’s. Less than 10 min after I took his pulse and O2, Scott was screaming. He instantly went limp in his arms. We did CPR instantly, called 911, and got the AED on him within a minute. NO rhythm… Local hospital did a conference call with his cardiologist at Children’s and tried everything….. nothing worked.

He looked like a pretty typical 6-year-old on Friday afternoon and earned his angel wings on Monday. 

 

Written By: Kate Middlemiss – Proud mother of “Joseph the Rock Star”

 

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