Faces of Loss, Faces of Hope

Sylvia

Mom to Angel Garcia

Born and Passed on April 30th, 2010

On October 28^th 2009 I took a home pregnancy test because I was a couple days late and knew pregnancy was highly possible.  I had my Mirena removed in July as Tim and I decided we would like to have another baby.  In November I had my first prenatal appointment and Tim and I were SHOCKED when the ultra-sound technician told us there were three heartbeats.  This was supposed to be number four, now we were learning it would be number five and six as well! 

  

Tim thought there had to be a mistake, I was immediately wondering how we would survive without my income because I was going to be busy with three babies!  We told everyone and showed everyone our ultra-sound with our 8week gest. Triplets.  I researched the internet and subscribed to Mothers of Super twins, reading everything I could.  I wanted to know what to expect, how did this happen?   

At 13 weeks I went to my first appointment with the perinatal specialist.  I knew there was something wrong when the technician left the room after only measuring two of the three babies.  I told my husband that I thought there was something wrong with one and he agreed.  The doctor then came in the room and explained what the technician had viewed.  One of my triplets had passed at about 12 weeks and one had an omphalocele (a birth defect in which the infant's intestine or other abdominal organs stick out of the belly button) and one of his legs appeared to be abnormal.  My heart sank.  In the brief time it took the technician to leave and the doctor to enter the room I had prepared myself to hear that one had passed and I was going to be left with two.  I thought, ok I can handle twins this is Gods plan.  I was not prepared to hear that there was also a birth defect that was not compatible with life as well!  My husband and I then with tears in our eyes and a broken heart walked to another doctor’s office for our appointment with another doctor in the same building.  

 We were given three options.  Terminate the whole pregnancy, there appears to be something very wrong, since one has died and one has all these birth defects.  Have a CVS (Chorionic villus sampling) done to rule out genetic defects, then go to a specialist that specializes in Twin-twin transfusion and terminate life to the baby with the defect in order to give the surviving triplet the best chance of survival.  The third, to do nothing and the doctors were against that.  It hurts me to admit but it is important to be honest and understand that I was in no place emotionally to make a rational decision.  I wanted to run!  I was so full of emotional pain and I just wanted the pain to go away!  I started thinking of how much strain this pregnancy would be and what if I couldn’t handle it, what if I ended up going crazy?  I had three perfect pregnancies and had always very easily gotten pregnant.  So why put myself through this, we should just terminate.   The doctor left the room for Tim and I to discuss and I expressed my thoughts to Tim and he disagreed.  Tim felt we should do what ever needed to be done to save the baby.  It was an emotional discussion.  Regardless of how Tim felt, it was my body and I was the one that would be carrying these babies and going through the medical procedures.  

 I agreed to have the CVS and go from there.  So off we went to another doctor’s office in the same building.  I watched on ultra-sound as the doctor put a needle in my tummy, taking a sample of the placenta next to my lifeless triplet.  I spent the next three days on bed rest with cramping and depression, one of those days was Christmas.  One the 3^rd day I received a call from a nurse telling me that the genetic test came back negative and genetically the babies were fine.  The babies are identical boys. 

My next appointment was with Dr. Walker in Kirkland WA, he specializes in a procedure where they separate the shared blood vessel in twin to twin transfusion.  Using a 4-D ultra-sound machine they viewed my babies and explained their plans for my babies.  The baby that they diagnosed as having Limb body Wall Complex -(LBWC) refers to a congenital disorder characterized by very severe limb defects and anterior body wall defects. The complex includes two or three of the following defects: exencephaly or encephalocele with facial clefts (a rare condition in which there are areas of absent bone and sometimes overlying skin that may occur on one or both sides of the face), thoracoschisis (birth defect in which organs in the thoracic area stick out) and/or abdominoschisis (birth defect in which the organs in the abdominal area stick out), and limb defects. Scoliosis and a short umbilical cord are also frequently found. Other findings such as defects of the internal organs (heart, intestines, genitals, or urinary tract) and persistence of the extraembryonic coelom (three separate fluid-filled spaces that lie outside the developing embryo) have been seen in cases of LBWC. The exact cause of the complex has not been determined.    There was a chance that the baby would die before birth and because they share placenta and blood vessel, in the event he died it could cause the healthy baby to bleed out and die as well.  They wanted to perform an Umbilical Cord Occlusion (This procedure is done inside the uterus, through a sheath placed by ultrasound guidance in the sac of the sick baby. Special tweezers grasp the cord and an electric current passes between the jaws of the tweezers, coagulating the blood vessels of that twin's cord. This stops the flow of blood in the cord and that fetus will die.)  So I make an appointment two weeks from then when I will be 16 weeks and my uterus will be big enough to allow for room to perform the procedure. 

I was not prepared to have a waiting time, if this is what I had to do, I wanted to get it done and over with.   

Well, nothing seemed to be going my way and I was forced to wait.  It was torture for me emotionally to know that I was going to be cutting life off to one of my babies.  I cried the whole way to my appointment.  A team of specialists came in and view my babies on ultra sound and discuss their plan.  The baby’s umbilical cord is very short and instead of being one cord with two veins and an artery, the two veins and artery is separated, leave my placenta and enter the baby at three different parts of his body.  The procedure will not be able to be performed.  They now want me to come in twice a week to check on the babies and make sure the pregnancy is going well.  The goal now is to get me to 20 weeks and go in a laser the share blood vessels.   If the event it looks like the baby with LBWC is close to dying, they will take their chance and separate the blood vessels sooner. 

I begin going once sometimes twice a week to these specialists.  The ultra sound technician is so compassionate and lets me know what she is looking at and explains everything she sees. I was laid-off from work because I was unable to meet the expectation of my boss.  I couldn’t have been more relieved!  My boys now have names, Angel is my sick baby and Isaiah is my healthy baby.  The omphalocele that contains Angels intestines and we think other organs that appear to be missing is bigger than him.  The omphalocele sits right on his stomach and it appears to pin him against my placenta.  Isaiah sits on the upper right side, while Angel rest on my lower left with his foot right over my cervix.  Sometimes they are head to head; sometimes Isaiah is resting his foot right on Angels head.  We look at Angel’s chest and see that his heart seems to beat outside of his chest, later it seems to correct itself and it almost looks normal.  He doesn’t have a clubbed foot like once thought.  They can never find his kidneys, yet he has a lot of amniotic fluid in his sack.  His measurements and heartbeat are always very similar to his brother’s, his brain looks normal, his limbs look normal.  His omphalocele adventualy gets smaller allowing him to move around more, but because of his short umbilical cord is always laying right above my cervix.   I battle with the hope that there will be a miracle and he will be fine.  The realist in me, says “you know how this is going to end just enjoy your time with him now”.  My placenta covers the whole front side of my uterus making it near impossible perform the procedures of separating the blood vessel.  I joined groups with other women who have carried to term knowing their baby will die.  It was so sad to read their stories but it helped prepare me for what will come.  I guess I start my grieving in small spoonful.  I toured the hospital and met the staff and explained my situation.  They prepared me for what my c-section would be like, what the NICU would be like and I wrote out my wishes for my birth plan.  I arrange for two photo secession with the Now I Lay Me Down to sleep photographers for maternity and birth photos.  The hospital gave me books to read to my other children about the death of a baby and why mom and dad will be sad.  A book about the NICU and what the special bed does and monitors and ventilators do and why the baby has to stay.  My oldest two are boys ages 15 and 7 and my youngest is a 4 year old girl. 

At 28 weeks my Fibronectin test came back positive, so they asked me back to the doctor’s office.  They checked my cervix and it measured .9 so they admitted me in the hospital for bed rest until I'm 32 weeks.  I got a l lot of help from family and friends to take care of my children at home, while I stood in the hospital waiting for the birth of my baby boys and the death of Angel.  I didn’t want that day to come.  I am 4’11” and carrying these babies was very difficult, but I just didn’t want to have to say good bye to Angel.  I remember getting so mad at my mom for saying, “Aren’t you excited?”  My baby is going to die, what is exciting about that? 

We were trying to weight for 5/7/10(32 wks), but I started contracting more on Friday early morning (31wks).  By 8am I was dilated to 3, and then a 5 by 10am.  I was only able to get 1 steroid shot.  The procedure was really complicated because Angel was taking up a lot of room and they wanted to get to Isaiah first and he was high.  I lost a lot of blood and need a transfusion.  Isaiah came out crying weighing 3 lbs 1 oz.  He did great for a 31 weeker, breathing on his own and was able to kangaroo.  Angel was 3lbs 8ozs, never cried, he was taking breaths, then would stop; when I would talk he would start to breathe again.  He took pictures with his brother and they brought him back to me and took a couple more breaths.  He was blessed and then he passed.  I brought him back to my room and the nurses made a keepsake album for him with his hair, hand prints and foot prints.  I slept with him that night and said my good byes in the morning.  I am glad I knew what to expect and everything was well planned, no surprises.

Angel's condition wasn't as bad as they thought and Limb Body Wall was not the diagnoses because there was nothing wrong with his limbs.  He looked perfect, just like his brother except this sack outside of his body.  We did have an autopsy done because both my husband and I needed to be assured that we made the right decision not to try to save him.  Angel didn't have a diaphragm and didn't have an opening for his rectum and the omphalocele contained his liver and intestines.

My husband and I both cry when we think of him, the delivery, watching him pass away was hard.  I am grateful that he heard and recognized my voice, but it was hard to watch him start to breathe again as a response to my voice.  The hurt I feel is so deep.  I know he is in heaven and I will one day be with him, but losing a baby hurts.

The babies in our NICU have their own room with a bed for the parents, restroom, shower and little fridge.  My husband and I took turns spending the night with Isaiah.  The hospital was 30 miles from our home which made splitting the time with Isaiah and our kids at home difficult.  Finally at 5 weeks Isaiah came home weighing 5 lbs.  My surviving triplet has quite the birth story and having him helps me with my grieving of Angel.  I still wonder what could have been, and why this happened.  It is hard for me to see multiples.  Next month Isaiah will be 1 years old.  I am still home with him.  I went right back to work with all my others, so this is a gift.  I have gained a new perspective on my life.  I have a new appreciation for my children.  I am so aware of the gifts in my life.  I am grateful for what I have, instead of being so focused and what I want.  Maybe that was my lesson.  

You can contact Sylvia at timandsil@gmail.com