Ronan's Story as told by Meghan
The warning is true. Life and everything we think we know about life can change in absolute second. Our instant life transformation came around 11:30am on July 26, 2016, by way of a bocce ball thrown during a game on the beach that hit our son RONAN in the base of his brain, rupturing just the right artery to change his life. A one in a million hit.
Ronan instantly collapsed. We were rushed by ambulance to a near by field where a helicopter would meet us and take us to Cooper Hospital. While we waited for the helicopter, the paramedics stood with me at the edge of the field and told me that it was bad. It felt like an ocean of sound rushing through my head but I heard the words brain bleed and closed brain injury.
I can still hear the roaring of the helicopter and I remember staring out the window holding Ronan’s shirt & shoes up to my chest. I heard them working on my son and I thought he was going to die in the helicopter.
One of paramedics came to me in the helicopter, put his hand on my arm and told me to think very carefully about Ronan‘s exact weight. That he was in pulmonary Edema and that they needed to give him the exact right amount of medication to save him.
We were met on the helipad of Cooper hospital by a huge team ready to work on Ronan. I can’t describe the surreal feeling, the deep, deep despair and the feeling of suspended reality.
Over the next 24 hours we would watch our son steadily decline, watch his blood pressure drop and in the early morning hours of 7/27 (my birthday) we would see him go into cardiac arrest 3 times over 45 minutes. At one point, Keith & I were asked to hold him down in the bed and talk to him while they administered cpr because the staff working was getting tired and the doctor wanted everyone to be at maximum physical strength to try pump oxygen to his brain. They needed all hands on deck.
We were told that his heart was failing and he wasn’t responding – we gave permission to put him on life support. It was explained to us that with was contraindicative to his brain bleed and that it was not protocol—they have gotten special permission from Dupont Hospital to do this as a “last ditch effort to save his life”.
A Team of miracle workers arrived from AI DuPont with a pediatric ECMO machine( he was initially put on an adult machine) and at one point the doctor from DuPont told us that Ronan was “the sickest boy in the tri-state area”. But...they were going to try to save his life.
At DuPont we were initially told that Ronan was most likely brain dead. We stood by with broken hearts and watched him decline again despite being on life-support. We were advised to say our last goodbyes. I can never explain the earth shattering, mind-blowing, crippling pain of what it felt like to say goodbye to my beloved firstborn child.
I put my hands on Ronan and willed my love & life energy into him. I begged the Lord to fill his brain & heart with healing light.
For reasons the doctors do not understand, Ronan's heart rate started to stabilize and he started breathing above the ventilator. The neurosurgeon looked into his eyes with a flashlight and declared that there were still some type of brain activity.
The room leapt into activity.
I think of this as the first moment of our healing journey.
The months after were an erratic roller coaster of ups & downs. Ronan would endure open heart surgery to move the ECMO cannuales to his heart, come off life support and begin to communicate with us ,showing much more brain activity than we had anticipated, only to be thrown back into brain trauma with the bleed of a aneurysm that had developed at the site of the injury.
He would undergo artery dissection surgery that would leave him weak on one side, several subsequent brain surgeries, countless MRI & CT scans, Catatonia, the implantation of a permanent brain shunt, a huge blood clot in a major artery, Vasospasms, a life-threatening gastrointestinal disorder caused by rapid weight loss, eye surgery and permanent ocular damage.
We lived in-patient at AI dupont for almost 5 months and then were discharged to an outpatient rehabilitation program which kept us in DE Monday -Friday for another 8 months.
Ronan is my personal hero in every way. He has struggled through countless hours of physical, occupational and speech therapies. We have done interactive metronome therapy, music therapy and art therapy with him as well.
Today Ronan is a full-time 8th grade student. It is a miracle that he has done as well as he has, but he has lifelong cognitive & physical disabilities. He is able to run & walk fluidly but his balance and depth perception are permanently compromised. He has what now looks like permanent double vision. He will never ride a bike again. He will never drive a car.
His real challenges lie in the cognitive deficits caused by his injury. Once a swift minded, gifted student who loved to read, he now struggles with schoolwork, reading & math.
His short term memory varies from limited to almost nonexistent. His executive function is very limited. Multi-step directions are a challenge for him as our multi-step problems. It’s difficult for him to read his beloved books because he can’t remember where he left off in the story or what the plot threads are. It’s difficult for him to organize his life and his classwork and homework. He has a full-time personal care assistant with him at all times in school.
We are ridiculously grateful that Ronan is alive and still has a decent quality of life but we struggle daily with heartbreak over the deficits that he now has. The very hopeful news is that we see advancement on an almost weekly basis. He continues to heal and develop new brain connections. We have great hope for his future!!
We will never stop fighting for Ronan’s brain to heal & rewire and now we have taken our determination & mission a step further. We are anxious to take what we have learned and use it to help other pediatric brain injury survivors and their caregivers to navigate through the difficult journey that is brain injury recovery and to make their lives brighter and more hopeful along the way.
We thank all of our family & friends and Team Ronan supporters who have stood by us and who are with us on this next leg of our journey with Project GreenHeart Foundation. We invite each & every one of you out there to walk with us, provide support to these warrior kids and to have a GREEN HEART.