Saturday, September 19, 2009

My story....

Hi, Heart Mommies, you are all warriors and special ladies and I admire you and pray for you and your families every single day. My son, Stephen, was born on May 29, 1996 and passed away on May 30, 1996. He had HLHS, and we were told he was not a candidate for any kind of life-saving the words of Dr. William Peeples, "that's a $100K surgery...who's going to pay for it?", as if we had no health insurance! Health care reform NOW! 

My pregnancy was uneventful...unlike my first two. With Joey (now 20) I had to stop working at 6 months....with Anthony (now 15) I had blinding headaches and they thought I had a brain tumor...nice! Stephen, however, was my "special" baby because the pregnancy was so smooth. I never realized how special he would really end up being.

I went to my ultrasound appointment by myself because after all this was our third child....I remember telling my husband..that the tech was so preoccupied with the student he was training (a very pretty young woman) that I felt like I was intruding! Then I never gave it another thought....

The day we went to see the OB/GYN, Dr. Lewis Heller, he asked if I wanted to wait (I was probably a week away from delivering and very uncomfortable) or if I wanted to be induced. I said....induce me!

On the way to the hospital, John C. Lincoln, Sunnyslope, we stopped to make a phone call (funny now to think that we didn't have a cell phone). I made arrangements with my mother and father to pick up Joey from school. They were already watching Anthony. As I got back in the car....I said to my husband, "it must be hard to carry a baby for 9 months and then lose it". My husband's reaction was shock..."why would you say that?" he said. I replied, "I don't know, it just occurred to me that it must be really hard". We didn't say anything else on the way to the hospital.

Once there and induced with gel, we started walking the nursery and looking at all the beautiful babies and laughing and joking. A few hours later, I was delivering and Dr. Heller stepped out of the room to take a phone call....the nurse, it turned out, remembered me from working with me at a non-profit agency called Southwest Human Development. Anyway she was a social worker nurse and new to OB nursing. While Dr. Heller was in the hallway taking his call, I told her, "I have to push", and she said "ok, push". I said, "if I do, he will come out!" I yelled at my husband to go get the doctor! As he was leaving the room, Stephen came out and was held by the nurse. She had no clue what to do and just held him. I was hysterical and kept saying "something's wrong with the baby, he's not breathing!" Dr. Heller walks in the starts to do his thing, and I kept repeating "something's wrong with the baby....he's blue, he's blue!". My husband said, "Roe, he's as pink as the other babies in the nursery". I kept repeating..."something's wrong"...Dr. Heller put his hand on my arm and said, "Rosemarie, the baby's fine, if anything was wrong with him, I would tell you". The resuscitation nurse whipped her head around and sternly said "...he's fine now, but he wasn't breathing a minute ago!". Well from there it just got worse....and no one was telling me or my husband what was going on. They just took our baby and never came back! I sent my husband to go find out where our son was and what the hell was going on.

Joe said, "no one will tell me what's going on". I said "that's it, I'm going to find my
baby". I started to get out of my bed and the nurse said, "where are you going?" I said, "to find my baby". She said, "you can't get out of bed, you just had a baby!" I remember tellling her "watch me" and then I went to the bathroom and went down the hallway looking for my son. I found him in a little incubator, all hooked up to machines. I said "oh, Stephen, my poor baby", and he opened his eyes wide and looked at me! I'm starting to cry now...remembering. He had hazel brown eyes like his other two sons have blue/green eyes like me. Although it may sound like all this happened immediately, it was SEVERAL hours before they communicated a plan of action and had him taken to St. Joe's. The next thing I remember is going back to my bed and three doctors coming into the room to talk to me and Joe. One was Dr. Heller, my ob/gyn and one was Dr. Peeples, the pediatric cardiologist, and I don't remember the name of the third doctor in the room. I do remember that he wouldn't make eye contact with he spoke to me and Joe about air vack'ing (by helicopter without us) Stephen to St. Joe's Hospital where he would undergo a special test that would tell them whether or not he was a candidate for surgery. I started to get out of bed, and Dr. Heller asked me if I wanted him to release me from the hospital. I remember that I could barely look at him and just said something to the effect of "I don't care what you do, I am leaving one way or another", and proceeded to get ready to leave with my sister to go to St. Joe's. Twenty minutes later we get there and the doctor's were all around Stephen's incubator and told me the results of the test supposedly indicated that there was nothing they could do for him. Again as I looked down at my beautiful 8lb 6oz baby boy and said "my poor baby", he opened his eyes wide and looked right at me. I remember the nurses saying how remarkable it was that he had been lethargic the whole time he was with them, but perked right up when he heard my voice. To this day, I regret not fighting harder for him. There is nothing that anyone can say that will make me feel any better...even when I read Ethan's blog and thought "maybe it was better that Stephen died"...I really don't believe that....I miss my baby boy and will always. And I feel the pain of each and every heart baby and their mommy and daddy whether their babies are angels now or warriors fighting to live.

As far as Dr. Lewis Heller goes, I did meet with him the week after Stephen was buried, and asked him how he could leave me to take a call...he said he was only gone for a few seconds. But it was more than just a few seconds, and to this day, I think that my Stephen died of lung- related problems that were a result of his not being suctioned out properly upon being born. 

Last I heard, Dr. Heller was studying to be a hypno-therapist like Dr. Brian Weiss. He recommended Dr. Brian Weiss' book and I do, too, because it did help me to heal somewhat. It's called "Many Masters, Many Lives" and I consider it to be a sort of bible to live by. Dr. Heller told me he was convinced that I had experienced a form of divine intervention to prepare me and help me cope with Stephen's death. He said that in 99% of cases, mommies have a completely different reaction when told that their baby may have a birth defect of some sort. He said their reaction is that of disbelief, denial, and refusal to accept the diagnosis. But in my case, he said that I was the only one who knew something was wrong immediately and believes my comment to Joe about carrying a baby for 9 months and then losing it was divine intervention and mommy's intuition. Dr. Heller told me he and his wife prayed over a stone in memory of Stephen in Sedona after my baby's death. Ultimately I know that he did not intentionally hurt my baby, and that he felt very, very sad about his death, and some guilt, I imagine...a lot of guilt. To this day, I don't know if he voluntarily stopped delivering babies or if he was sanctioned or something....I do know that his wife is a lawyer and I believe that because of that I was unable to find a lawyer willing to take my case. The bottom line for the lawyers was..."since the baby died and does not have any life-long medical needs, there is no basis for a lawsuit....pain and suffering don't count, and he wasn't an income-producing member of the family". Sickening...I know.

And Dr. Peeples, kind and considerate (can you hear the sarcasm) Dr. Peeples, I finally resolved my feelings for him by telling myself that when he meets his maker (if he hasn't already) he will have to account for his actions or lack of. BTW, Dr. Peeples, also took it upon himself to forge my husband's name to a "waiver of autopsy" form because he "wanted to spare us the agony of that decision", but yet had no problem asking me "who was going to pay for a $100K surgery?" when I asked if they could do a heart transplant on my baby. And further stating that surgeries were not done on newborns....I know that as you read this many of you may be thinking that in 1996 that was true, but it really wasn't. I remember the first heart surgery performed on a newborn and it happened about 10 years earlier.

Stephen would have been 13 years old this past May...I imagine he and his middle brother, Anthony, fighting over stuff and getting into all kinds of mischief together. But, it was not meant to be!

I love my sons, and know that they are sensitive, young men who experienced loss early in their lives. I believe this loss has made them into the young men they are today...sensitive and caring.
I pray that nothing ever happens to either one and yet, I am afraid, to say "because I don't think I could handle it". You see, both my sister and brother lost newborns, too. I don't remember a funeral service for my brother's little girl, but I remember the funeral for my sister's little girl, Marisol. At that funeral, I remember telling Joe that I could never, ever deal with losing a baby and would never, ever go to another baby's funeral as long as I lived....little did I know that in future years I would, in fact, go to another baby's own son's.

You may be wondering why now? Why is she blogging about this many years later? Well, for one, because this technology was not as prevalent as it is now, and secondly because I have been moved to tears by your blogs...the stories of your babies (warriors), your joys, your sorrows, and your angels. I pray for you all. I pray that one day, all CHDs will be repairable and maybe even preventable!

God bless you all and may He give you the strength to carry on for your babies....

With sincere love,

Rosemarie Tirelli