March 9, 2007 was one of the most beautiful and tragic days of our life. Our son, Liam Hayden McNamara passed away. How could we possibly consider that a beautiful day? Because his last few breaths were not wrought with anguish, pain and suffering. They were full of peace, calm, and relief.
Because of Liam's condition, Lissencephaly (Miller-Dieker Syndrome), his life and ours was full of constant questions, pain, and turmoil. We had been told after several ultrasounds during the pregnancy that the ventricles in his brain looked enlarged; however, at the time, a determination could not be made to the severity of the situation. Little did we know at the time, that this news meant that the clock was ticking.
November 10, 2005 arrived, the day we had all been waiting for. Liam,
and his fraternal twin brother, Nathaniel, were to be delivered by
C-section. We had been prepped that both boys may end up in the NICU
for some additional care, but we
would finally meet them. Our older son could have his mom back from
many weeks of bed-rest, with 2 additional gifts. Immediately upon
delivery, Liam was whisked to
the NICU, with problematic breathing, while his twin was cleaned up and
taken to the nursery. They had been together from conception to birth, but from this moment on, their lives would be take very different paths.
Two days into post-partum recovery, the OB-GYN, and a neonatal physician paid us a visit. We knew the news had to be bad if they came together. They said that they definitely thought something was "going on" with Liam. He showed signs of a syndrome. A neurologist and geneticist would examine him, and do some blood work to try to give him a label.
Nathaniel came home from the hospital like any normal, healthy baby would. Liam stayed behind in the NICU, trying to learn to suck, so that he could come home too. When it
was determined that he could come home, the doctors were still not
ready to give Liam a formal diagnosis. We left the hospital given
little information or guidance as to who to contact, or what to do next.
Upon arrival home, we knew that something was very wrong with Liam. We
still had no diagnosis, but he was having such difficulty eating, his
cry was very strange, and his demeanor, compared to his twin, seemed
very unusual. After several visits to our initial pediatrician, and
being told there was nothing to worry about, she
finally relented and gave us the name of an ENT and a feeding
specialist. The speculation of what could be wrong, ran the gamet . They thought that maybe Liam was deaf, and we should have him further evaluated, since he had failed a hearing
test twice in the hospital. After determining that Liam was not deaf,
the ENT then suggested we go for a cranio-facial analysis, due to the
fact that Liam's facial structure appeared to relate to some type of syndrome. Meanwhile, the blood work came back, and the syndromes the geneticist had tested for were all negative. The neurologist sent us for head ultrasounds, to compare with those done when Liam was in the NICU, but there was no change to be seen.
As the weeks went on, we were sent from one specialist to another, with no definitive answers, and no known direction to take. It was at this point, that we truly knew our child had major issues that needed to be cared for. We were desperate to find
anyone to help us properly diagnose, and provide appropriate medical
care for him. Through our persistence and determination, we happened upon the proper doctors and caregivers. The radiologist who had performed our prenatal ultrasounds had recommended that an MRI be done as soon after birth as possible. We became insistent to have it performed; however, since it involves anesthesia, and Liam was so small and young, the doctors were reluctant to do it. Again, after much prodding, the MRI was finally done in March, four full months after birth.
After the MRI, the neurologist called, and said he wanted to meet with us. We were sure the news would not be good, but we were not prepared for what we were told. Liam had lissencephaly. What did that mean?
It meant his brain did not develop properly, and all the functions
related to cognitive activity were profoundly delayed. He would never
walk, talk, hold his head up,
roll over, or reach for a toy. He would have chronic seizures,
respitory problems, feeding problems, gastrointestinal dysfunction, and
repeated pneumonia. The average life span for someone with his
condition is 2 years. We were devastated, but, at least, we had an answer. Now, the next wave of questions would crash over us. What kind of care would he require? How could we do it, with no medical training? What do we do now? With each question, we led ourselves to the answers. We had been led to a black cave, given a blindfold, spun around, and pushed in.
Hospital and doctor visits became routine. After many visits, we became so familiar with Room 680 at Overlook Hospital, that it became known as "Liam's Room".
In November 2006, Liam was admitted with a severe case of pneumonia. The doctor told us he didn't think Liam would make it through. We decided that we wanted to take him home. Hospice was contacted, and they made an initial
visit. Miraculously, Liam began to get better. Hospice continued to
visit weekly, just checking on him, reminding us that if he took another turn, they did not have the manpower to help us as much as we thought. The caseworker also told us that she really didn't have any experience with pediatrics, but she would do her best. .
In January 2007, Liam was admitted to the hospital, once again. We notified the hospice worker not to come that week. We never heard from them again.
What we wanted for Liam was what was best for him, and we had hoped for more support.
We found that while the health care professionals we were involved with
did a great job at treating his symptoms, there was a great lack of support and knowledge regarding our wish for quality of life vs. quantity. We knew that his path had been predetermined, and our only wish for him was to be guided there with no pain or suffering
We were forced to consider and make decisions that no parent should ever have to be confronted with, and in that, we felt like we were completely alone. It just is not supposed to happen this way, and so, we continued to struggle. We knew from the start that we had limited time with Liam, so we wanted to make the most of what we had. He was an integral part of our family, and although our world was turned upside down, we would continue to live our lives as best we could. We found the doctors, nurses and therapists to best care for Liam, but when the subject of our wishes for his end of life care came up, we were,
again, back in the cave. We wrestled with our thoughts and emotions, as
we coped to make decisions, wishing there was someone there to help
guide us.
* How could we let him suffer through one more night of constant crying, coughing, and agony?
* How could we listen to the hum of the suction machine and screams of terror when he heard it go on?
* How could we administer more drugs to try to combat the seizures that he was inflicted with, without putting him into a comatose state?
* How could we pay a visit to the hospital every 6 weeks, listening to his lungs fill up with fluid, making breathing extremely difficult?
* How could we listen to the doctors tell us that he may not make it through the night?
* How could we watch, as his smile disappeared with every passing day?
* How could we have quality time with our family, with a nurse in our home 16-24 hours a day?
* How could we continue to shelter our other children from the pain of watching their brother die?
* How could we want to refuse treatment for our own child? How could we sign a DNR?
*How could we utter the words to the doctor,
on March 6, 2007:
"No, we don't want to give him anymore antibiotics or
treatments. We just want to make him comfortable?"
This was our son, a child that we wanted so badly, fought so hard for, and had so many dreams and hopes for. Now our wish for him, at 16 months old, was to let go, stop suffering, stop fighting,
and drift off to heaven. While he finally floated to heaven, looking
down on us as he went, we sat together in a hard wooden rocking chair.
He left us in a room with oatmeal colored walls, fluorescent lights
flickering, a pulse-oximeter blipping, and a metal crib empty. He gave
us one last gift before he left. He let us hold him and love him while
he took his last breath.