Sam at 3 months
Later this week, on April 3rd at 3 AM, it will be the first anniversary of my infant son’s death. I was finally permitted to hold him in the end, and I felt his very last fluttering of a heart beat. Up to that point, since I had given birth to Sam nearly four months before, at full term, I had only been allowed to hold him once, only one time in my arms. The nurses were so afraid that his ventilator tubing would get dislodged.
I should have been more aggressive, more demanding, but I was not. During his nearly four months, we talked to him, sang to him, played classical music and the Beatles for him, stimulated his mind with his little Bambi doll, gave him his bed baths (he seemed to love water, and we dreamed of taking him swimming), and kissed him always.
Sam was born with Hypoplastic Left Heart Syndrome (HLHS), vein atresia, hypoplastic right lung, and a small cleft palate. We only knew of the HLHS before he was born (and he had his first surgery, the Norwood/Sano, at 8 days old). The doctors actually did not figure out the vein atresia and hypoplastic lung until much later, when Sam was struggling to get off of the vent (he had to be stable off the vent to be able to leave the hospital with us). It almost looked like Sam had a “syndrome”, but after genetic testing, it was found that it was not a chromosomal problem. It was just a “fluke”, although I and my new perinatologist suspect perhaps the small dose of generic Prozac I was taking during conception may have come into play.
We (his dad and I) basically ‘lived’ at the hospital for those weeks and months. The day before Sam died, I went to work (I’d gone back to work part-time after my maternity leave was over – so I was either at work or at the hospital or sleeping), but I had a feeling that I should not leave. I left anyway, but the feeling that something was going to happen, one way or the other, kept growing.
I should have listened to my intuition, but I didn’t like what I was feeling. There was also going to be a decision made by our son’s medical team that day before – whether they were going to totally remove his tiny right lung and reroute things back to his heart. This was because his veins going from his little lung back to his heart were just completely missing (this is a highly unusual anomaly). They were hopeful that they could maybe eventually get Sam off the vent without having to trach him.
The day before that decision was to be made, they had taken Sam to the cath lab to check things out one more time. They had to go in through his liver. He probably started having a slow blood leak in there internally afterward. They couldn’t find it though, but before I left the evening of April 2nd (I really didn’t want to leave, at all; my gut said to stay), they transfused him. He was stable right then, so they told me go, get some sleep.
I never did go to sleep that night. As I had done that day at work, I clutched my cell phone waiting for the call that I just “knew” would come. My husband went to sleep easily that night – he didn’t have my “mother’s intuition”, or maybe he just didn’t want to listen to it, either. One of the medical staff called two hours later, and said “Come now.” He was crashing. They got him back and he crashed a few mores times after we got there.
If our handsome little Sam (who had the most luscious eyelashes and huge brown eyes, like his daddy) had been ‘normal’, he would be almost 16 months old now. We have been following where his growth and development might have been. We’ve imagined him crawling and then walking, maybe even attempting one of those funny little wobbling, toddling runs that little ones have for a while. We imagine him trying out the stairs for the first time. We’ve imagined him eating Cheerios, and making huge messes. I’ve imagined him in the bathtub, enjoying his baths as much as his mommy enjoys hers. We wonder what words he might be trying to say.
Celebrating holidays has been bittersweet. . . we keep imagining Sam. It is all in our heads now. We have no real memories of doing these things with him, just what our imaginations can provide.
This is the short version of our story. . . but I can’t handle writing any more right now. Thank you.