As many of you know or maybe you don’t know, our son Owen suffered from a perinatal stroke. Not long after Owen was born on Saturday August 22nd, 2015 at Newton-Wellesley Hospital a nurse noticed something was “off” while I was nursing him. Owen was then moved to the special care nursery. After spending some time in the special care nursery the neonatologist discovered that Owen was having seizures and they were not completely sure what the cause was. So she thought it would be wise for Owen to immediately be Med Flighted to the NICU at Brigham and Women’s Hospital. Since I had a C section and I had 2 more days of recovery in the hospital, I was then transferred in an ambulance to BWH to be with Owen.
During Owen’s 27 day stay at BWH NICU he was observed and treated by teams of neurologists, neurosurgeons, hematologists, researchers from Harvard Medical and the countless nurses who adored him. These teams of Dr’s diagnosed that Owen had a stroke which caused a hemorrhage/blood clot to form in one of the ventricles on the right side of his brain, which was not allowing the cerebral spinal fluid to flow normally, causing a blockage. Owen had developed hydrocephalus. The blood clot and blockage were putting pressure on his brain, causing the clinical signs of seizures. Owen was put on 2 seizures meds and since day 2 in the NICU, he has not had a seizure and was slowly weened off both anti-seizure meds.
The long term side effects from the stroke, could not be determined. The Drs explained that they could not predict the life Owen would live. They explained that because the blood clot was on the right side of his brain, there could be significant hemiplegia, paralysis, on the left side of his body. He may never gain use of his left hand, arm, leg- he may never be able to use the left side of his body, he may never walk, he may be in a wheelchair when he gets older, he may never eat solid foods on his own and always need a feeding tube.
To alleviate the hydrocephalus and keep the spinal fluid flowing, the neurosurgeons recommended they surgically place a VP shunt. Sam and I had a final meeting with the neurosurgeons regarding the shunt surgery. We discussed the procedure itself, step by step, the risks, the recovery. We were ready to move forward- well as ready as we could be. We signed the paperwork and it was decided Owen was having surgery.
We went home that night mentally and physically drained but hopeful that we had a “plan” set in place and were now anxious. That night the Drs did a 2nd spinal tab/lumbar puncture in an attempt to remove the excess fluid and relieve some of the pressure on Owen’s brain. After the lumbar puncture they ordered a head ultra sound to see how things looked.
When we arrived in the NICU early the next morning the nurse asked if we had heard the news. We both looked at each other and our hearts stopped. She looked at us again and said no no its good news! The results of the head ultrasound showed that the hemorrhage had rearranged itself/changed shape and the fluid was able to flow normally on its own. If things stayed like this, Owen would not need the shunt. Sam and I were in disbelief. We thought the nurse had made a mistake and misunderstood the results. She knew we were in shock and she had the Drs come to us and explain it again to us.It was true, nurse Marcia was correct. She told us she has been a NICU nurse for 30 years, and she has never not once seen this happen. It was a true miracle.
When I first met Marcia I was hesitant. She was pushy, loud and bossy. My first thoughts of her, were who the hell does the lady think she is? Im not letting her take care of our baby boy, no way. Im going to go tell them I want someone else. After just a short time, I realized Marcia was exactly the type of nurse I do want taking care of our son. The one who questions everything everyone does, not just the other nurses, the ones who would relieve her, but the Doctors, radiologists and anyone else who even came close to Owen. She would push Owen to eat on his own, so we could take that damn feeding tube out. He hated it and kept pulling it out of his nose. She was the one who helped Owen pass his car seat test, after he had failed before. She pushed for the social worker to set up meetings and consults for us to sit down with the teams and discuss our concerns and clear up our confusion. Marcia wanted nothing but 100 percent from everyone.
On Saturday September 19th, 2015 Owen came home.
Since Owens homecoming he has been seen by Early Intervention therapists who come to our house and his daycare working intensely with him to help him reach each milestone in the crucial first years.
His physical therapist Deb, has been an nothing less than an angel. She has been amazing with Owen, she has been patient with him and yet at the same time she pushes him in ways that Marcia did. She knew she had to, and still has to push him through this battle. Deb has been a friend and ally to me. As a first time mother, I had so many questions for her about Owens diagnosis, the physical and mental challenges the future may hold for him and besides all that everyday “Mom Stuff”. She has been a shoulder for me to lean on and some one who I feel I can really open up to with no judgements towards myself or Owen.
Owen is being followed by his neurologist Dr Micheal Rivkin at Boston Children’s. He has been another angel in our lives. He has answered all of our questions over and over again. He has been impressed and heart-warmed with Owens progress over the first year and a half. At Owens last check up with him he showed me the MRI images from when Owen was first born to the more recent ones and I can not believe the change in the ventricle size. It was great to see the change in size and gave me some relief but at the same time it made me realize how significant Owens stroke really was.
Owen has been resiliant and his strength has been incredible. He has come so far, he continues to have low muscle tone in his upper body but he is walking and starting to say words. He enjoys all kinds of foods, pickles and blueberries are his current favorites. He is our super hero.
This journey has made us slow down as much as possible in all aspects of life. We are learning how to soak it all in and enjoy every little moment. After reading and researching the devastating affects a stroke can have on infants, children and their families, it has made us feel truly grateful. Blessed that the nurse who, looked like she was 12 years old, who just came in to my hospital room to take my vitals, noticed something wasn’t quite right with Owen and sent him to the special care nursery. I find myself wondering what would Owen be like if she hadn’t noticed. How different things might be for him. We were lucky to have discovered his diagnosis so quickly. Stroke can happen at any age. I have read countless stories about other infants, children and teens whose signs and symptoms of stroke were caught weeks, months, even years after the stroke initially occurred. While Owen was in the NICU we saw first hand how fortunate we are to live in the Boston area and to have access to such astounding hospitals. There were families there from Rhode Island, North Carolina and some even from other countries.
For these reasons, we as a family, have decided to walk this year for the 1st time at the Eversource Walk for BCH. This is our small way of giving back and hopefully giving another child who may suffer from a stroke or another devastating illness, an opportunity to have the best medical care.
We hope you can join us but of course we understand if you can not. If you can donate, please do. We can not express how much we appreciate all the support and every penny donated.
Love, Nicole, Sam and the one, the only Owen-credibe