OUR STORY
My name is Dee and this is our story of Dante's short life, which has forever changed ours:
Dante Thomas Marchisillo came into our lives for only 29 short hours, but lives in our hearts forever. During my pregnancy, I was diagnosed with a bacteria called Group B Strep (commonly referred to as GBS).
A good way to explain this bacteria to people who have not been affected by this killer, is that is a bacteria similar to Strep throat (Strep "A") but it is Strep B. This is a very common bacteria found in as many as 30% of all women.
When I was diagnosed with this bacteria in my 5th month of pregnancy, it took me by surprise. I asked my doctor "how did I get this and how can I get rid of it?"
It was explained to me that I was BORN with this bacteria and could never "get rid" of it. It can be eradicated, but never completely destroyed. It also surprised me since I had two other children and had never heard of this.
My doctor assured me that this was nothing to worry about and that if I had never had problems with it in the past, I should be fine. He also said that most doctors do not test for Group B Strep, and that I should consider myself "lucky" to know that I was Group B Strep positive. He also explained that being GBS positive meant that I would get a dose of antibiotics in labor and that at the first sign of any problems with the baby, that he would be treated with antibiotics. I went home and told my husband and never again worried about this killer lurking in my body.
When questioned as to my prenatal history at my prenatal appointments, I always mentioned my GBS status and received the same response, this reassured me that Group B Strep was "no big deal."
At my 39 week prenatal appointment, I was told that my cervix was still very far back and I would probably not deliver for another week. I could not think of going through another week of not sleeping and wondering when it would be time. I was elated when my doctor explained that he could perform a procedure to help me go into labor a few days earlier. This procedure (although it wasn't explained as a procedure is called "stripping of the membranes" or "sweeping of the membranes" I was very familiar with this procedure since I had this performed with my pregnancy with Matteo just two years earlier. I agreed and he performed the membrane stripping. This was a Wednesday afternoon.
Wednesday evening as I started my Mommy domesticated routine, I didn't feel quite right. I was very uncomfortable and noticed that I had started to bleed. The bleeding continued throughout the night and I also started to get contractions. They were so intense, that I though the "sweeping of the membranes" was successful and that I was in labor. I packed my pillow, my reading glasses, my camcorder the whole nine yards.
I WAS IN LABOR!!!
When I arrived at the labor and delivery deck (about 5:30 A.M.) I was not greeted with friendly faces, but instead was greeted with a "why did you wake me up if you are not in labor?" face. I explained that I was 39+1 and that I was in labor.
I was taken to a triage room to wait for the next hour until a midwife finally came in. I was then hooked up to monitors for approximately 2 hours and was told by this midwife that all tests were normal and my symptoms were all "normal" signs of "stripping of the membranes" and that the "baby looked good on the monitors." She told me that she was not saying that I was NOT in labor, but that I didn't have the "classic" labor signs and to come back if the symptoms increased, or if my water broke. I was dismissed and sent back to WORK. (I worked in the hospital where I delivered)
The next day (Friday) I continued to spot and have mild cramping, but my water did not break, so I did not return back to the labor deck as instructed. I knew my days were numbered and tried to finish up some reports. I ended up coming home early that day because I had not been feeling well and I rested. That evening I did my kick counts as normal and all seemed well within.
On Saturday 17 Mar 01, I woke up and felt really horrible. I told my husband that I was going to lay down and that if I did not feel better that he would have to take me to the hospital. I recall laying there and reminiscing about my entire pregnancy, and how this would be my last child and the last time I would wear maternity clothes and the last time that I would not have to worry about dieting, etc.
I felt three strange movements and knew that something was wrong. I got up to go to call my husband and when I did, my water broke. As I looked down at my clothing, it was green stained and I knew that this was a sign of menconium and that something was wrong.
We rushed to the hospital (about a 20 minute drive). I started having contractions the last 10 minutes of the drive, they were so intense, and kept coming, one right after the other. I kept thinking to myself that this was going to be another quick labor like with Matteo. I was so excited when we turned the corner and I could see the hospital, because I knew I would be taken care of and it would soon be over.
When I got to the labor deck, I was rudely greeted by a technician who was too busy on the phone to notice me standing in front of him. He instructed my husband and I to wait in the waiting room until a bed became available. I told my husband to go move the car now (which was still parked in front of the ER) and to grab my bags. When he returned, I was still in the waiting room. He stormed over to the front desk and told them that I was in the waiting room and was in labor. I guess one of the doctors on call overheard him and they came for me.
I was placed in the triage room and when I took off my clothing, green menconium stain ran down my legs. The staff gave me a gown and checked me; I was 3 cm dilated. I was placed on the fetal monitor and quickly removed because the baby was showing signs of distress.
I was taken to a birthing room. There were a myriad of people running about. I was very nervous and being questioned left and right. I told them that I was GBS positive and they attempted to start an IV.
Starting the IV was an ordeal. I was stuck over 8 times in both arms and even the so called "expert" could not get a vein. I started to panic when I heard the nurses whispering to each other that "if they didn't get an IV started and the baby crashed that I would be trouble. I kept hearing medical jargon and the doctors were talking amongst each other about how Dante did not look good. At this point they still didn't have the IV in.
After about the 8th stick, they found a vein. Another doctor also started internal flushing to try to flush the menconium out of my system. Then all of a sudden, the baby crashed on the monitor and I was pulled out for an emergency C-section.
I don't remember much before I was intubated except that I heard all kinds of instruments clinking and I heard the doctors scream to get the pediatric doctors in the room. I just prayed to God and was intubated.
My next recollection was waking up and having nobody around me. I tried to call out for help, but my throat was so sore from the tube that they had just removed. The nurse finally realizing I was awake, came over to me and I asked for my husband. When Dave came over to my bed, he had tears in his eyes. I started crying and asked if the baby had died. He told me that Dante was very sick and was in the NICU.
I cannot recall a lot of what happened (and I have to live with this sort of amnesia every day), but I do recall the Neonatologist coming into my room to talk to me. He told me that Dante was gravely ill and might not live, they suspected Group B Strep.
I was still in shock and these words did not hit home until later that evening. My husband had left the hospital to care for our other children and I was alone in my room. I prayed to God; it was one of those "here I am again God and I need a favor" kind of prayers. It was at that time that God told me that Dante was going to die. I thought I was losing my mind, quit praying and cried myself to sleep. I surpressed this memory of my conversation with God for a long time and only recently recalled it.
I was awakened around 1:30 am, by the Neonatologist. He told me that Dante had taken a turn for the worse and may not make it through the night. I started attempting to call my husband at home as he continued to talk to me. I ordered him out of my room, I didn't want to hear what he was saying. I frantically called my house and the nswering machine came on. I started screaming and my Dave finally picked up the phone. I told him to come immediately, that Dante might not make it. I look back now and wonder how he made that drive.
I then told the nurse to take my to see Dante. I had not seen him up to this point. Looking back, I really don't know why. I think I was in shock and denial and that I was afraid of what I would see. When I finally did see my son, it was only the back of his head. He was hooked up to so many monitors and he looked so weak and helpless. I held his hand and called out his name. Each time I talked to him, his little blood pressure would elevate, he knew I was there. I talked to him, cried, prayed and begged him to get better.
Dave arrived about 30 minutes later and we went back to my room with the neonatologist. We were informed that the cultures for Group B Strep had come back and that Dante was totally infected with Group B Strep. They believed that he had contracted it in utero. We were given 3 options: 1. To continue doing what they were doing (the highest doses of meds, the maximum amount of oxygen etc. 2. Surgery called an echmo or 3. To remove life support. I immediately answered for both of us to keep doing what he was doing and try to save our baby.
The doctor left and Dave and I just sat there in shock and denial. I can't even recall what we talked about. We later inquired about the echmo and were told that the procedure would have to be performed at a children's hospital, and that the hospital was aware of Dante's situation. They did not want to take him on as a candidate because he had a poor prognosis and they did not think that he would even survive the flight. We were also told that Dante had suffered kidney damage, liver damage, heart damage and brain damage, although they didn't know to what extent with the brain damage. I later learned that he had been born dead and was resuscitated for 8 minutes before they got him breathing. His APGAR score had been 0-0-4.
The whole next day, if there was a next day was a blur. I remember the doctors coming back and forth telling us that things were a little better only to return and say that things were turning for the worse again. We were also told that Dante would not survive and that it was only a matter of time before he died. His body just could not fight this bacteria.
Dave and I had to make the worse decision that a parent must ever make. We decided that Dante had suffered so much already and we decided to end his suffering and take him off of life support. We walked down to the NICU hand, making the decision that would haunt us the rest of our lives. I recall walking down that long corridor, passing the exam room where I had my prenatal appointments and where only days before he was healthy on the monitor.
We finally reached the NICU and informed the staff that Dante had suffered enough and we signed the paperwork to have him removed from life support.
I could not be in the room when they removed his tube, so Dave was left to bear the brunt of that traumatic experience. Looking back, I wish I was there to hold him as he took his last breaths. Dave the brave one was the one holding him instead.
I was guided to a nearby private room to wait for them. As I waited in that lonely room, I wanted to run back in the NICU and tell them that I changed my mind, but I knew that Dante had suffered so much and that we were only prolonging the inevitable.
When the automatic door opened up, I saw Dave holding Dante. It was surreal. This was the first time that I had seen his whole body, without tubes and IV lines hooked up to him. He was beautiful and so big.
Dave and I stayed in this room, cried and were numbed by what had just taken place. I held, rocked and talked to Dante. I sang the "Winnie the Pooh" song to him and just kept wondering how this could have happened and wishing it was a nighmare. As I held Dante he took 2 breaths in my arms. A doctor finally came in and listened for his heart. He was pronounced dead at 7:32 p.m. on Sunday March 18, 2001, the worst day of my life.
As with any parent, we had no idea what to expect next. A private NICU nurse came in the room and asked us if we wanted to bath and change Dante. I remember thinking why were we going to wash him if he was dead. It was only when I was washing his little body, that it dawned on me that he still had my blood on me. He had never been cleaned from the birth. I washed him gently for the first and last time and dressed him in some clothes that I had picked out for him. I dressed him in a little Carters outfit. It was a cream kimono suite that said "if they could only stay little till their Carters wear out." It was one of my favorite suites that I had dressed my other son Matteo in, and I wanted Dante to wear it too. Looking back, I should have dressed him in something very special that was purchased special just for him and not hand me downs from his brother.
Dave and I also spent the night in this special room sleeping with Dante between us. That was very difficult for me. I was scared and I was in denial. I'm not sure what I felt but I was scared of him. I really can't explain it. I don't know how I should have felt, but I know now that my time with him was very precious and I should have savored it.
The hours that passed to the next morning were hell. I had labor pains and I had vivid dreams of the whole experience over and over again. I was also in a lot of physical pain.
It was a Monday morning, and about 7 a.m., the night nurse came in and told me that I had to return to my room. I wanted to take Dante, but they would not let me wheel him or carry him to the room. They told me that they would have a nurse take him to me in about a half hour. I did not want to leave him, but they wouldn't let me take him. As I walked back to my room, I felt everybody's eyes upon me. It was like the whole Labor deck knew my baby had died. I walked by one of the triage nurses that I was very familiar with and she looked at me with sadness in her eyes. I walked by blissfully pregnant women and wanted to scream. I went back to my room and just cried.
We kept Dante with us most of that Monday and we finally realized that we had to say good-bye. This was one of the hardest things for me because I knew he would be going to the morgue and be all alone, but we had to let go and let him be in peace.
Two days later we had Dante flown to my home town of Fall River Massachusetts and had a burial for him there. We did not have an open casket or a viewing, but we did get to see him in the funeral home. Actually, I saw him for a split second because I sort of lost consciousness, I don't remember much. Dave saw him and held him, he said that he looked beautifu. I regret not seeing him that one last time, but I know that I cannot change the past.
We layed our son to rest in Saint Patrick's cemetery in the same plot as my father and my older sister. He is now an Angel in Heaven who looks down on all of us. I know that I will see him again and that gives me peace. I have since then given birth to a beautiful angel named Marissa Dulce. She has helped fill a immense hole in our hearts, but can never take Dante's place (nor did we expect her to). I look at Marissa and think that somehow Dante had to die to make room for her to be here. What a price of love that little Dante had to pay. Marissa will always know how much we loved Dante and the story of his life. My subsequent pregnancy with Marissa was an extremely draining and emotional pregnancy as anyone who has lost a child can imagine. She arrived safely and healthy on March 13, 2002 weighting in at 8 lbs and 7 oz and 20 1/4 inches long.
We have since settled our lawsuit agains the government and the amount of money we received for Dante's pain and suffering and our pain and suffering, is sickening. I really wanted the government to acknowledge that they screwed up and did not treat me correctly, but I will never receive that appology.
Since Dante's death, the law has changed and all pregnant women are now tested for Group B Strep. I am concerned with "false-negatives" and women believing they are GBS negative and are really GBS positive. It behooves all women to know the facts of GBS. GBS kills; it is something that should be taken seriously. It is not enough just get tested and leave it up to their doctors to know what to do. They need to ask questions and get the facts. There are things you must do and not do if you discover you are positive.
I think about and miss Dante every day of my life. Our lives will NEVER be complete and any good that will ever come to my life, will still never make me complete. Everyday I am a little better than the day before, but I will never be "over it" or "move past this". Losing a child (especially by negligence) is something that isn't supposed to happen and one never forgets.
I can never forget!
I will never forget!
We cannot ever forget!