Sunday, June 20, 2010

A hole in the heart, a hole in the family

A little dark haired girl is wearing purple sweatpants with matching sweatshirt. Her dad, wait that's my dad but much younger, so the little girl must be me, is holding her hand as they walk through some sliding electric doors into the dim light of a corridor with an information desk and waiting rooms off to the side.

Why would this be my first memory?

I was not quite two years old. It was September of 1986 so I was 22 months old. The only reason why I know this is because that's when my brother died. Those doors opened to the hospital where my mother learned that her 38 week gestation baby was dead and that even though labor had started, she would be birthing a stillborn. Somehow, I picked up on the emotions of my loved ones and knew something was very wrong and that memory stuck.

Later my mom told me that her loss was so great that her desire to live only remained because of me.

Growing up, the explanation for why my brother died was unclear. As a teenager, I learned that he had a heart defect that, obviously, was not compatible with life. I heard different things: he had a hole in his heart, one of his arteries was not connected correctly and his heart formed inside out.

I didn't know that when I was 10, my dad had requested the medical records as well as the autopsy report. I also didn't know that I would find those records when I was cleaning out my mother's garage this summer.

Cause of death: Complete transposition of the aorta and pulmonary arteries.

Of course, I didn't know much about what that meant so I set out to learn.

I learned this defect is most commonly called Transposition of the Great Arteries or vessels. What is means is:
Babies with TGA have two separate circuits -- one that circulates oxygen-poor (blue) blood from the body back to the body, and another that recirculates oxygen-rich (red) blood from the lungs back to the lungs. Without an additional heart defect that allows mixing of oxygen-poor (blue) and oxygen-rich (red) blood, such as an atrial or ventricular septal defect, infants with TGA will have oxygen-poor (blue) blood circulating through the body, a situation that is critical. Even with an additional defect present that allows mixing, babies with transposition of the great arteries may not have enough oxygen in the bloodstream to meet the body's demands.(1)

The first question I had after obtaining that information was how did he even live as long as he did. This diagram illustrates how there is some mixing of blood in the atria (upper segments of the heart).

I also learned that in most cases TGA is not determined until after the baby is born and they are blue and floppy without pinking up over time and with treatment. This was a surprise to me because here I am learning that most babies survive birth with this condition and my brother did not.

It can be corrected early with surgery and most babies with the condition survive and unfortunately our family didn't get that opportunity. I perhaps more so than other young children have felt his loss because with his death I became and remained an only child. I often felt the hole in our family from not having a sibling and knowing that we came so close and suffered such a devastating loss that made it so.

I've also wondered if my parents could have known prenatally that the baby had a defect that was life threatening. My mom had told me after I became a mother that she had not had an ultrasound with my brother's pregnancy because it hadn't seemed warranted. In 1986, it hadn't yet become standard practice to conduct the 20 week anatomy check.

Could a routine mid-pregnancy ultrasound have caught it?

This question of routine ultrasound is still be discussed hotly in the scientific literature, as well as among expectant parents. Each couple or mother has to come to that decision for her/themselves and it will often be based on the values and perception of risk for the individuals.

My mom given her knowledge at the time decided to avoid a sonogram during that pregnancy, and none of the doctors pushed for it. Its not like now where its the exception to forgo the 20 week anatomy scan. Its within a family rights to choose one or the other. I've had to consider it myself and working through this experience gives me some more insights into the decision making process.

From what I've been able to learn about TGA, early ultrasound can detect it (2). A study using ultrasound to detect TGA prenatally started in 1986 and out of 68 fetuses with suspected TGA, 57 truly did (3). That's a pretty good detection rate. And according to the authors, mortality rates were lower when it could be anticipated before birth. They caution however that the technician must be adequately trained to detect fetal heart anomalies and the emotional upheaval of knowing ought to be weighed against nature taking its course.

I am now picturing the high-risk hell that my mother may have experienced in knowing early that my brother had this defect. Maybe it would have been discovered at 20 weeks and biweekly biophysicial profiles and non-stress tests would have been conducted to give him time to mature but then to end his gestation at the first sign of distress. If he died in utero between 32-34 weeks, that is a really early premature baby and in his case, one in acute need of open heart surgery to repair the defect.

A high chance of death anyway, a long NICU stay, recovery from a repeat c-section with a toddler at home, emotional trauma from the fear and horror of parenting a sick premie, the stress of the hospital bills--that could have been my family's alternate reality.

I've spent enough time at Solace for Mothers to know the pain, suffering and difficulty that comes from a birth experience like that. Knowing myself the trauma that comes from a negative birth experience, I can't choose which I would prefer. I know, from observation and from my own loss, the grief that comes from the loss of a stillborn baby. Would I choose that because its familiar? Because I recognize that the laws of nature are a crapshoot and sometimes babies die? That maybe facing his loss the way it happened was going to somehow be better than losing him after the trauma of a premature birth? The chance that my mother herself could have died given the increased risk of maternity mortality for cesareans over vaginal birth?

Of course, a question I've asked myself is what was the cause of the defect.

I've blogged before about the possibility that my mom's previous c-section could have contributed to my brother's stillbirth, though I have not found any evidence suggesting that a prior c-section can predict a congenital heart defect. Environmental contaminants have been named as a possible explanation (4)(5). In talking with my mother, I learned that she remembers smelling the solvents in the inks used in her workplace during her pregnancy with my brother. I already found the work of organizations like Environmental Working Group and Pesticide Action Network compelling but this further adds to my awareness of the effects of environmental contaminants. Not only do I find their ubiquity insidious but I am angered at the cover-ups employed to deny the facts and the lack of regulation and ethics that have caused so much damage already that the public is only beginning to learn about now.

I have to remind myself though, "Most of the time this heart defect occurs sporadically (by chance), with no clear reason for its development" (6).

And of course, nothing changes the reality. My mother continues to cling to me for her hope and happiness and I'm learning what being a sibling is like through watching my children. Comfort is found in the plan of salvation as taught by the LDS Church that my brother belongs to our family for eternity and that I will have the opportunity to know him in the next life. I already sense that my father, upon his death, was welcomed to the spirit world by his son.

(1) Children's Hospital Boston "Transposition of the Great Arteries"
(2) Role of Ultrasonography in Early Gestation in the Diagnosis of Congenital Heart... Abu-Rustum et al. J Ultrasound Med.2010; 29: 817-821
(3) Detection of Transposition of the Great Arteries in Fetuses
Reduces Neonatal Morbidity and Mortality in the journal Circulation 1999;99;916-918

(4) Having Faith: An Ecologist's Journey to Motherhood by Sandra Steingraber
(5) The Body Toxic by Nena Baker
(6) Children's Hospital Boston "Transposition of the Great Arteries"

1 comment:

Anonymous said...

the grief that comes from the loss of a stillborn baby. Would I choose that because its familiar? Because I recognize that the laws of nature are a crapshoot and sometimes babies die? That maybe facing his loss the way it happened was going to somehow be better than losing him after the trauma of a premature birth?

that's an amazing statement. i cannot imagine though that anyone, given the chance of saving their child, would chose not to, incase losing them after intervention was somehow harder than losing them before intervention. having spent many weeks in hospital from 28 weeks on, having my son born via c-section, watching him struggle, and eventually die after 2 days - i would never, ever go back and chose to just go home and wait for him to die there. i would do it all again - because if there was ever a chance, no matter how small, that he could be here with me, i would die for it. i understand your grief as a young child losing your sibling, but i don't think you can understand a mother's pain after burying a child until you have been there. questions about recovery time after having a premature baby never even factor into the equation. you just want them to come home with you, no matter what that might cost.