At the age of 6 weeks old, Zachary Buckley was diagnosed with Cystic Encephalomalcia
. This is a very severe condition that shows Zachary has a lot of brain damage. During his NEC infection, Zachary “coded
.” For those unfamiliar with this term, “coding” simply means that he had to be resuscitated and brought back. The lack of oxygen and blood in his brain during this episode are likely what caused his condition. Much of Zachary’s brain has been damaged, and unfortunately, we have no treatment options for this. The neurologist explained that Zachary’s condition means that it will be very unlikely he will be able to have a "normal life". He will need full term care and support and in his opinion, Zachary has about a 50/50 chance to make it through this first year
. In many other infant cases that he has seen, many patients will not make it into their 20's.
His parents, Brendan and Helene, asked that I share their story in hopes of raising the money to allow Zachary to be moved from California to Michigan – where they are both from – to allow him to be surrounded by family and friends. The cost of a MedFlight can be more than $150,000. As his condition is very unstable, we hope to move Zachary this week.
All proceeds raised not needed for his transport will be donated directly to St. Jude Children’s Research Hospital.
Zachary has incredible courage
and a fighting spirit
. What he has battled through has been very difficult and he continues to amaze all of us. At this point, the main things that we can provide to support Zachary are:
– an important reason why we want him to be surrounded by the rest of our families in Michigan
to assist his body and brain and sustain what function is left
I thank you for taking the time to read Zachary’s story below, and my dear friends Brenden and Helene for allowing me to share. Please understand that we have a very long, difficult recovery ahead of us. We still need our miracle, Zachary, to keep the miracles coming. Zachary’s Story
On October 28th, 2015, Zachary Buckley was born at Sutter Hospital in California at the gestational age of 29 weeks, 5 days
. Zachary sustained a very serious NEC infection on November 10th that caused his heart and lungs to struggle. This induced a resuscitation that included chest compressions and adrenaline to help his heart and lungs stabilize. Miraculously, he made it through an emergency surgery that proved to be devastating to his small intestine. A second procedure, November 12th, was exploratory to investigate if there was any remaining infected tissue. Unfortunately, he had additional small intestine that had to be removed. He ended up losing close to 75% of small intestine. The digestive system is still in repair and not connected.
The medical team was very concerned for Zachary after his NEC infection, complications and two surgeries (and the trauma that it may have caused). An ultrasound after the 2nd surgery did not show any abnormalities. He had a few days of recovery after surgery and he was progressing very well. The physical exams, conducted by the nurses at bedside everyday, raised some concern about two weeks ago. Zachary's head was growing, in circumferance, at an abnormal rate over the course of about 4 days. The doctors again were concerned and ordered a brain ultrasound. The ultrasound provided some very troubling news:
1. Bilaterial Intraventricular Hemorrhage (IVH) Grade 3:
Zachary had a severe bleed in his brain and there was potential for long-term issues on both sides of his brain.
2. Periventricular leukomalacia (PVL):
A very worrisome diagnoses with many risks for developmental disorders and possibly cerebral palsy.
After additional studies (an MRI and an additional ultrasound), we had a chance to finally meet with a neurologist today. We never had a chance to really prepare for what he would share with us. He had concluded that Zachary's PVL had progressed into an additional, more severe, diagnosis
. Zachary now has what is called Cystic Encephalomalacia. This is a very severe conditional that shows Zachary has a lot of brain damage. This can be related to complications from his original NEC infection and emergency surgery on November 10th. This is something that is very detrimental to young, premature babies. It will cause serious complications and issues. The Future:
Our neurologist explained that it will be very unlikely that Zachary will be able to have a "normal life". He will need full term care and support. In his opinion, Zachary has about a 50/50 chance to make it through this first year. In many other infant cases that he has seen, many patients will not make it into their 20's. He will probably have difficulty with some of our most basic motor functions (walking, crawling, talking and eating). However, we will not change what we're doing every day. Our plan is to love him, give him the therapies he needs to get better and have faith and the power of prayer.
Zachary is the happiest young baby I have ever been around. Not just a biased opinion, but he has been nothing but wonderful throughout his 6 weeks with us. He recognizes us as soon as we open our mouths and also smiles often. We were able to finally get the green light to attempt bottle feeding Zachary about 7 days ago. He has done so well that they increased his volume from 5mL every 3 hours to 20mL every 3 hours in those 7 days. He has even now received the 'OK' from his doctors for him and mom to breastfeed twice a day. He has done exceptionally well with all of this and we're so happy. He is flirting around the 5lbs weight for a few days now and he is starting to put a little fat on (even in his wonderful little cheeks). He has stolen the hearts of his primary nurses and his parents. Wow! He is such a wonderful, loving baby. We are amazed that we're able to love him even more ever-single-day.
The support has been wonderful and sometimes overwhelming. He is such a wonderful baby and we are not sure how this is even possible. We will continue to work with our medical staff, social workers, chaplains and priests to provide the best plan and care for Zachary. Please continue to pray for Zachary, Helene and I as we will need all the strength and courage that we can muster.
We love you all. We have had some of our best days with Zachary recently. He has brought us so much joy, love and happiness. We are very sad, but we will remain focused on what we can control. Only time will tell what our strong Zachary will be able to accomplish. More than anything, we want Zachary to be able to spend his days under the loving comfort and support of our family in Michigan.
Even the smallest donation will help in making this possible and are truly greatful for all those that have contributed.