What Happened

I guess there are quite a few people who have been reading my blog or have heard about me through friends and have asked, "What happened to Maxie?"  I so wish that I had an answer to give you (and myself).  An answer that would make sense to you so that you could think to yourself, "that will never happen to my kid" and so that I could think to myself, " we can prevent this from ever happening again".  But, as cruel luck would have it, we have no answers.  All we know is that when Maxie woke up on the morning of July 19th, all was normal in our house.  Ted got up and gave Max a bottle, changed him, put him in his onesie for the day and brought him into our bedroom, where we played with him for a while.  I got dressed and then put Max in the high chair and fed him mushed up bananas and greek yogurt.  Then I took him to daycare.  Tisha reports nothing unusual happening that morning.  All of the babies go down for their first nap at 10 am.  She goes through and changes each one of them and gives them bottles before they go to sleep.  It is like a science over there and they all pass right out.  Max hadn't even been changed yet.  He was lying in his crib awake, waiting to be changed, like every other morning since he was 3 months old.  Tisha was changing another baby on the changing table right next to Max when she saw that he was turning blue.  She picked him up and he was limp, and she immediately started infant CPR.  She then called for her mother, who is a pediatric nurse, to come into the room and take over while she called paramedics.  They were there within a few minutes and he was rushed 4 blocks away to St. Joseph's, where after 30 minutes, the doctor in the ER was able to get his heart beating again.  I was there for the last 15 minutes or so and I thanked the doctor through my frantic tears for saving my baby.  As it turned out, by then he had lost too much oxygen to his little brain.  The paramedic that picked up Max to move him to the PICU in Tarzana pulled Ted and I aside and said that they would try to keep his heart beating to the next location but that even so, he wanted to warn us that he sensed something foreboding.  I won't get into the whole rest of what happened from there now but once at Tarzana, he was looked at by a number of doctors who found a perfectly healthy heart, a perfectly healthy set of lungs and perfectly healthy brain.  We kept him on life support praying that he would be our miracle baby but it didn't happen.  He was gone.  He has since been autopsied and the coroner's office also did not find anything.  People keep telling me it was a one in a million kind of thing and that there is no explanation.  At first I didn't need an explanation, my baby was gone.  Now, I am desperate to know what happened.  But, I may never know and that just adds hurt and distress upon our pain.  Everyone did everything right and still this happened.
The ER called Max's pediatrician when they were trying to get his heartbeat back and by the time I checked my messages again, I heard a voicemail from his office from one of the nurses there.  She said they were calling to see what happened to Max.  They wanted me to call them whenever I could.  I actually didn't get around to calling them until the Monday after the day Max died.  I ended up talking to his pediatrician who seemed to wonder why I was even calling.  "Yes" he had heard Max died and while he, himself didn't talk with the Coroner's office directly, he heard what had happened.  He had just checked Max the week before and all was fine.  He basically told me that these things sometimes (though rarely) happened and then sounded eager to get off the phone with me.  That conversation sent me into a tailspin.  Didn't he care?  Max was his patient!  Max was just a baby!  Wasn't he as distraught as I was about what had happened? He was not and that was clear. 
The next day I called Dr. Dwight, my OBGYN, who I love and who I know everyone loves.  He is a love!  I told him what happened to Maxie and he sounded horrified, he couldn't believe his ears.  I told him how sad I am and he empathized with me.  I told him that I know it sounds soon, but we wanted to start trying again, to which he answered, "Absolutely!  You must!".  He offered to look over Maxie's reports just to see if maybe he could find anything that anyone else may have missed.  He assured me that I will have more babies and that this will never happen to us again,  I wish I could feel as confident as he sounded.  The last thing I asked him on the phone was whether he had ever heard of anything like this happening to anyone before and he answered, that "No", he hadn't.  So sad.  Why my Max?!!!!!!
 Since then, several bereaved parents have reached out to us.  Parents of babies, of teenagers, young adults and adult children.  I am so grateful that the have the strength to want to help us, upon the strength they need just to take care of themselves.  We all feel so different and yet, so the same.  Ted's cousins lost their daughter many years ago in an in-line skating accident.  He wrote me this morning about how fresh their sorrow is on the Yarziet (anniversary) of her passing and how he hoped that, as the sages have suggested, Ted and I will have “the strength to change what you can, the courage to accept what you can’t,  and the wisdom to know the difference between the two”.


ninaberries said...

I am so sad to hear your story and pray that you and your husband are able to find some solace in friends and family. No rush to listen because it's a difficult story to hear, but I often think of my colleague, Linton Weeks, and the loss of his sons. He did a beautiful and heartbreaking story about being a bereaved parent on All Things Considered:


You're so brave for sharing this story and I hope you get some answers soon! xo nina

Unknown said...

I am so sorry about Maxie. Our Toby was also labeled a SIDS death but now we don't know. Since having our rainbow baby (almost a year to the date of Toby's first birthday) we have found out that she has a very rare genetic condition called biotinidase defieiency. It is so rare that it affects only 1 in about 100,000 births. It leads to severe mental retardation, seizures, coma, strokes, and death if not treated early on. If it IS treated it causes almost no problems. Unfortunately, Toby was not tested for this. Our other son is a carrier. We found that out recently as well. Chances are that Toby either had it or was a carrier. We will never know, as it was not tested for in his newborn screening or toxicology labs. He may have had a stroke or seizure in his sleep. Unfortunately, he had been gone for several hours when I found him. When you have a newborn and you're exhausted you tend to sleep at the drop of a hat. I woke up the next morning with alarm because it felt like I had slept too late. When I got to him, he was already cold and blue.

Even more than a year later I feel like I am living in a dream. The pain doesn't go away, it just changes.