Fatal Diagnosis

Sylvia

Mother of Angel Garcia

He was born and died on April 30, 2010

On October 28 ^, 2009, I took a home pregnancy test because I was a few days late and knew I was probably going to get pregnant.  My Mirena was taken out in July when Tim and I decided we wanted another child.  In November I had my first prenatal visit and Tim and I were shocked when an ultrasound technician told us there were three heartbeats.  It was supposed to be number four, but now we've learned that it will also be number five and six!

 

Tim thought it must be a mistake, I immediately thought about how we would survive without my income, as I will be busy with three children!  Tell everyone and show everyone our ultrasound from our 8th week of pregnancy. last.  I surfed the internet, subscribed to Super Twin Mothers, and read everything I could.  I wanted to know what to expect as it happened? 

At 13 weeks, I went to my first perinatal appointment.  I knew something was wrong when the technician left the room after measuring only two of the three babies.  I told my husband that I thought something was wrong with a friend and he agreed.  Then the doctor came into the room and explained what the technician was looking at.  One of my triplets died at around 12 weeks, one had omphalocele (a birth defect in which the baby's intestines or other abdominal organs protrude from the navel) and one of his legs appeared abnormal.  My heart sank.  In the short time it took until the lab tech came out and the doctor entered the room, I braced myself to hear that one had passed and I had two left.  I thought, well, I can handle the twins, that's God's plan.  I was not ready to hear that there is also a congenital malformation incompatible with life!  Then we went to another doctor's office with tears in our eyes and a broken heart to another doctor in the same building.  

 They gave us three options.  It ends the whole pregnancy, it seems like something is wrong since you died and you have all these birth defects.  To rule out genetic defects, do a CVS (chorionic villus sampling), then see a twin transfusion specialist and end the life of the child with this defect so that surviving triplets have the best chance of survival.  The third did nothing, and the doctors were against it.  It hurts me to admit it, but it's important to be honest and understand that I emotionally failed to make a rational decision.  I wanted to run!  I had such strong emotional pain and I just wanted the pain to go away!  I started thinking about how exhausting this pregnancy will be, what if I can't handle it, what if I go crazy?  I had three perfect pregnancies and always got pregnant very easily.  So why are you doing this to me? We have to leave.   The doctor left the room so Tim and I could talk about it, and I told Tim my thoughts and he disagreed.  Tim thought we should do our best to save the baby.  It was an emotional discussion.  No matter how Tim felt, it was my body and I was carrying these babies and having medical procedures.  

 I agreed to get CVS and get out of there.  So we headed to another doctor's office in the same building.  I watched with an ultrasound as the doctor inserted a needle into my stomach and took a sample of the placenta along with my lifeless triplets.  The next three days I spent in bed with cramps and depression, one of those days was Christmas.  On the ^third day, a nurse calls me and tells me that the genetic test is negative and that the children are genetically OK.  Babies are the same children. 

My next meeting was with Dr Walkers in Kirkland WA , specializes in a procedure that involves cutting a common blood vessel when transfusing twins to twins.  They examined my children for a 4D ultrasound and explained their plans for my children.  In a child who has been diagnosed with Limb Body Wall Complex (PCB) , it is a congenital condition characterized by very severe malformations of the limbs and anterior body wall . The complex includes two or three of the following malformations: encephalopathy or fissure encephalocele (a rare condition in which bony areas appear and sometimes cover the skin on one or both sides of the face), thoracoschisis (congenital malformation). if organs protrude into the chest ) and/or abdominal schizophrenia (a birth defect in which organs protrude into the abdominal cavity ) and limb defects. Scoliosis and short umbilical cord are also common. Other signs such as defects in internal organs (heart, intestines, genitals, or urinary tract) and preservation of the extraembryonic body (three different fluid-filled spaces outside the developing embryo) have been seen in LBWC cases. The exact cause of the complex has not been established.    There was a chance that the baby would die before birth, and because they have the placenta and the blood vessels, if he dies it can lead to bleeding and the death of a healthy baby.  They wanted to close the umbilical cord ( This procedure is carried out in the uterus, through an inductor placed in the bag of a sick child under ultrasound control. The umbilical cord is captured with special pliers and an electric current is passed between the claws, the blood vessels c the fruit will die.) So I'm going to make an appointment in two weeks when I'm 16 weeks old and my uterus is big enough for the procedure. 

He didn't want to wait if it was something he had to do, he wanted to do it and do it. 

Well, nothing seemed to happen and we had to wait.  It was emotionally painful for me to realize that I had taken the life of one of my children.  I cried all the way to the meeting.  A team of specialists came, examined my children for an ultrasound and discussed their plan.  The baby's umbilical cord is very short, and instead of being a couch with two veins and an artery, two separate veins and an artery, come out of my placenta and into three different parts of the baby's body.  The operation could not be performed.  Now they want me to come twice a week to check on the kids and make sure the pregnancy is going well. Now the goal is to get me to 20 weeks and use a laser to separate the blood vessels.   If it looks like a child with LBWC is about to die, they will take the risk and cut the blood vessels early. 

I start visiting these specialists once or twice a week.  The ultrasound technician is very responsive letting me know what he is looking at and explaining everything he sees. I was fired because I didn't live up to my boss's expectations.  There could be no more relief!  My children already have names, Angel is my sick son and Isaiah is my healthy son.  Omphalocele, which contains the Angel's intestines, and we believe other organs that appear to be missing are larger than it.  The omphalocele rests on my belly and presses it against my placenta.  Isaiah is sitting in the upper right, and Angel is leaning in the lower left, his leg just above my cervix.  Sometimes they stand face to face; Sometimes Isaiah puts his foot directly on the angel's head.  We look at Angel's chest and see that his heart appears to be beating outside of his chest, then straightens up and feels almost normal.  He doesn't have a club foot, as we thought.  They'll never be able to find his kidneys, but he's got a lot of amniotic fluid in his bladder.  His height and heartbeat are still very similar to his brother's, his brain looks normal, his limbs look normal. Her omphalothelium shrinks over time so she can move more, but because of her short umbilical cord, she's still above my cervix.   I fight in the hope that a miracle will happen and everything will be fine for him.  The realist in me says, "You know how this is going to end, just enjoy your time with it." My placenta covers the entire front of the uterus making it nearly impossible to perform blood vessel separation procedures.  I joined groups with other women who used it because they knew their babies would die.  It was very boring to read your stories, but they helped prepare me for what was to come.  I guess I start the duel with small spoons.  I visited the hospital, met the staff and explained my situation.  I was prepared for what my C-section would be like, what the intensive care unit would be like, and wrote down my wishes for the birth plan.  I organize two photo sessions with Now I Lay Me Down to sleep photographers for pregnancy and childbirth photos.  In the hospital, I was given books to read to my other children about the death of a child and why mom and dad would be sad.  A book about resuscitation, what makes special beds, monitors, ventilators and why a child should be there.  My two eldest are 15 and 7 years old, and the youngest is a 4 year old girl. 

After 28 weeks my fibronectin test was positive so I was asked to go back to the doctor. Checked cervix and showed 0.9, so put to bed until 32 weeks. I received a lot of help from my family and friends to take care of my children at home while I was in the hospital waiting for the children to be born and Angel to die.  I didn't want this day to come.  I'm 5ft 1in tall and it was very difficult for me to hold these babies, but I just didn't want to say goodbye to Angel.  I remember I was very angry with my mother because she said to me, “Aren't you angry?  My child is going to die, what's interesting here? 

We tried to keep the weight off on 5/7/10 (32 weeks) but I started contracting early Friday morning (31 weeks). At 8 am , I extended to 3 am, then to 10 am . M. at 5 a.m. . I only managed to do 1 injection of steroids. The procedure was very complicated because Angel was taking up a lot of space and they wanted to be the first to see Isaiah while he was drugged. I lost a lot of blood and I need a transfusion. Isaiah came out crying, weighing 3 pounds 1 ounce. He was fine for 31 weeks, breathed on his own, and could engage a kangaroo. Angel weighed 3 pounds 8 ounces, never cried, took a deep breath, then stopped; Every time he spoke, he started to breathe again. He was photographed with his brother and they gave him back to me and I was still breathing a little. He was blessed and then he left. I took him to my room and the nurses made him an album with prints of hair, arms and legs. That night I slept with him and said goodbye in the morning. I'm happy to know what to expect and everything was well planned, no surprises.

Angel's condition wasn't as bad as they thought, and the body wall of the limbs wasn't diagnostic, as everything was fine with the limbs. He looked perfect, like his brother, except for that bag.  We did the autopsy because my husband and I needed to make sure we made the right decision not to save him. Angel had no diaphragm or rectal foramen, and the omphalocele contained his liver and intestines.

My husband and I cry when we think of him, it was hard to watch him die. I'm grateful he heard and recognized my voice, but it was hard to see how he started breathing again in response to my voice. The pain I feel is so deep. I know he's in heaven and one day I'll be with him, but losing a child hurts.

The children in our intensive care unit have a separate bedroom with a parental bed, toilet, shower and a small refrigerator.  My husband and I will take turns spending the night at Isaiah's.  The hospital was 30 miles from our house, so it was difficult to spend time at home with Isaiah and our children.  Finally, 5 weeks later, Isaiah returned home weighing 5 pounds.  My surviving triplets have quite a rich birth history and they are helping me survive my grief for Angel.  I still think about what could have happened and why.  I see almost no plurality.  Next month, Isaiah will be one year old.  I am always at home with him.  I'm working with everyone again, so it's a gift.  I have a new perspective on my life.  I have a new understanding of my children.  I am so aware of the gifts in my life.  I'm grateful for what I have, instead of focusing on what I want.  Maybe that was my lesson.  

You can contact Sylvia at timandsil@gmail.com