Remembering Tommy

On Friday August 25, 2006 I chose to “say goodbye early” to my very much wanted baby boy at 14 weeks pregnancy after having received a Trisomy 18 diagnosis (also known as Edwards Syndrome).  When I think back to the sequence of events that lead to that tragic “choice,” I cannot help but wonder where were the paths to hope that would have enabled me to choose life?  I bear my own responsibility in authorizing the death of my child, but my choice was not made in isolation.  The medical profession and the church were also active participants towards his demise.  At this point in my life, I can only wish that as a society we could learn to support one another rather than to retract from the responsibility of bad news and pain.

It has often been said that no two pregnancies are alike.  My husband and I rejoiced at the news that we were expecting our second child.  Yet, each pre-natal visit we attended led to signs that something wasn’t quite right.  The first clue came at our six week sonogram to ensure the pregnancy wasn’t tubal.  The sonographer could not detect the baby’s heartbeat.  “Are you SURE you got the number of weeks right?” he asked.  So, we returned the following week and discovered the baby did indeed have a heart.  My husband kidded with the radiologist saying that this child could never be a lawyer, because he had a heart!  That was the end of June.   Life was good.

In mid-July I underwent a multitude of routine tests and lab work at my obstetrician’s office.  In retrospect, he must have suspected something wasn’t quite right, because he seemed particularly interested as to my reasons for refusing an amniocentesis during my first pregnancy.   I told him that my husband and I didn’t believe in abortion, and that amniocentesis carried a small risk of miscarriage.  At age 35, the risk of carrying a child with Down syndrome (1:270) approaches the estimated risk of fetal loss due to amniocentesis (1:200).  Why would I risk aborting a perfectly healthy child to perform a test that carried an equal risk of abnormality whose conclusion would result in our keeping the child regardless of the outcome?  I did not anticipate the severity of his reaction to my response.  I don’t remember exactly what was said, but I do remember him telling me that I did not know what I was saying and that HE would not want to go through all that.  I left his office a bit bruised, but content that I stood my ground.   My husband and I then departed on a family reunion vacation, tucked away in a cabin in the Great Smoky Mountains white water rafting, to celebrate the Quinceanera of my husband’s cousin, where we announced the news that we were expecting our second child amidst loud congratulations and cheers.  Life was still good.

Then, August came.

On Thursday, August 10th I was scheduled for the Nuchal Translucency sonogram at 12 weeks.  This prenatal screening test uses ultrasound to measure the translucent space in the tissue at the back of the baby’s neck.  This measurement can help assess the baby’s risk for Down syndrome and other chromosomal abnormalities as well as congenital heart problems.  Babies with abnormalities tend to accumulate more fluid at the back of their neck during the first trimester, causing this clear space to be larger.  Needless to say, even I, the ignoramus, noticed the fluid build-up and rather large gap behind my baby’s neck on the video monitor.  Once again, the sonographer asked me, “How many weeks did you say you were again?”  The baby’s measurements weren’t adding up to the gestational age; the baby was too small.  Of course there was no reason for concern, because researchers have measured the nuchal folds of thousands of babies between 11 and 14 weeks of pregnancy, and because a baby’s nuchal fold will normally get a bit thicker with each day of gestation, they’ve been able to establish what an average or “normal” thickness would be for each day during those three weeks.  I probably had my number of weeks wrong.  Make an appointment and come back next week so that the doctor can compare the results of my blood work to the nuchal screening.

I never made it to the re-scheduled appointment the following week.  On Monday, August 14th, I received a rather authoritarian phone call from my obstetrician STRONGLY suggesting that I cancel my appointment and schedule a CVS test.  The Department Head of Obstetrics and Gynecology reviewed my Nuchal Translucency results which showed significant abnormalities.  The Nuchal Translucency screening is not a diagnostic test; it only computes statistical risk.  What this means is that if you’re 35 and the baby’s nuchal fold measurements are average for his age, the baby’s risk for Down syndrome stays the same (1:270).  If it’s thicker than the average, then he has a higher risk for an abnormality.  If it’s thinner than the average, his risk is lower.   Based on the results of my nuchal exam, my baby had a 1:8 risk of having a chromosomal abnormality.  At this point, I was concerned, but still hopeful.  A 1:8 chance of a problem still put the odds in my favor.  Nevertheless, I agreed to the more invasive CVS test reasoning that the benefit outweighed the risk.  The risk of our baby having a chromosomal abnormality (1:8 or 12%) significantly outweighed the risk of fetal loss due to the CVS test (1:200 or 0.5%).   If in the unlikely event that there was a problem with the baby, I would want to know so that we could prepare.  I assumed the worst case scenario would be a Downs Syndrome baby, a baby we would keep and love.  I never would have thought that “prepare” would mean aborting my child.

On Tuesday, August 15th,  my husband accompanied me to the CVS test.  There, we first met the genetic counselor who opened a rather LARGE textbook of genetics and showed us the DNA structure of all 23 pairs of chromosomes found in the human body.   It was at this point that the word “Trisomy” was first mentioned.  Humans normally have 23 pairs of chromosomes, numbered 1-22, and the 23rd chromosome is the female (XX) or male (XY) gender pair.   A Trisomy occurs during egg or sperm cell formation where the child inherits three, rather than two, copies of a chromosome.  The more commonly occurring and generally recognized genetic abnormality, Downs Syndrome, occurs when the child inherits three copies of the 21st chromosome and is therefore also know as Trisomy 21.  Trisomy 18, or Edward’s Syndrome, is a genetic abnormality where the child inherits three, rather than two, copies of the 18th chromosome.   If you were to look at the molecular structure of the 18th chromosome next to the molecular structure of the 21stchromosome, 18 is one of the “large” chromosomes and 21 is the “short” one.  The larger the chromosome is, the greater the impact on multiple organ systems.  Armed with a lesson in genetics and the probability of a favorable outcome, my husband and I were led into the examination room.

CVS, or Chorionic Villus Sampling, is a prenatal test that scrapes a tiny tissue sample from outside the sac where the fetus develops and is tested to diagnose or rule out birth defects.  The test is generally performed between 10 and 12 weeks gestation.  Amniocentesis can diagnose the same birth defects, but is performed later in pregnancy usually between 15 and 18 weeks gestation.  The distinction is that the CVS test samples tissue from outsidethe sac whereas amniocentesis samples amniotic fluid from inside the sac.  Because amniocentesis carries a greater risk of miscarriage the earlier in pregnancy it is performed, CVS is considered an equal risk alterative to amniocentesis later on.  Both tests carry similar risk of miscarriage (1:200).  Needless to say, at that point, I was more interested in the miscarriage risk than the chromosomal risk.  By the grace of God, the test was performed without incident, and I went home feeling like I just stepped off a galloping horse.

Then the phone rang.

Wednesday, August 16, at around 2 o’clock in the afternoon, I received the phone call at work from the genetic counselor.  I happily greeted her with, “You called to give me good news, right?”  Her response was, “I’m sorry.”  My heart skipped a few beats.  Despite the odds being in my favor, my child tested positive for Trisomy 18.  I asked her if that was the long chromosome or the short one.  She said it was the long one.  She then proceeded to tell me everything that Trisomy 18 meant in that nice, sweet and well-trained voice of an empathetic counselor expert in giving parents bad news.  I only half listened.  I didn’t want to hear a sales pitch; I wanted facts.  So, as she was speaking, I was sitting at my desk, logged into the internet Google search engine, and queried Trisomy 18.  That’s when the tears came that effectuated the look of every co-worker around me.  I asked the genetic counselor if the baby was a boy or a girl.  She said boy.  I asked her what the next step was.  She said to get in touch with my obstetrician.  I remember telling her, “I suppose I should probably call him, but I know what he’s going to tell me.”  With that, we hung up the phone.  To my obstetrician’s credit, he waited until Friday morning to get in touch with me.

Not ten minutes after I got off the phone with the genetic counselor, my husband called.  He called repeatedly all morning wanting to know if I had heard any news.  I asked him to stop pestering me at work, that I was trying to get work done, and when I hear from them I will let him know.  Needless to say, he called too soon after the news broke, because I was trying to compose myself enough to call him and give him the bad news.  He already knew the answer, because I couldn’t get the words out past the tears.  So, I emailed him the results of my Google search instead.

The statistics are overwhelming.  A whopping 95% of children diagnosed with Trisomy 18 either miscarry or are stillborn prior to birth, and of the 5% who do make it to birth, half will die within three months and the remainder will die within one year.  Very few survive beyond their first year.  Natural selection has “blessed” me with a death sentence for my very much wanted child.  Our baby was going to die.

If by physical appearance my baby was to look like an alien with …

• an “usually small head where the back of the head is prominent”
• “malformed and low-set ears, and a small mouth and jaw”
• a “cleft lip or palate”
• “hands clenched into fists where the index finger overlaps the others”
• “clubfeet and toes that may be webbed or fused”

I didn’t care.  I would still love and have my baby.

If by learning ability my baby was to:

• need “support to walk,”
• be “severely mentally retarded,”
• possess limited “verbal communication,”
• lack an “ability to recognize and interact with others,”

I didn’t care.  I would still love and have my baby.  I have read stories of “miracle” Downs Syndrome babies who, with proper nurturing, made significant contributions to society despite the odds.

But then I started to read the numerous problems involving the internal organs including:

• the lungs and diaphragm
• heart defects such as VSD (Ventricular Septal Defect – a hole between the lower chambers of the heart), ASD (Atrial Septal Defect – a hole between the upper chambers of the heart), and coarctation of the aorta (a narrowing of the exit vessel from the heart)
• kidney abnormalities (un-descended testicles in males)
• omphalocele (a portion of the intestinal tract located outside the stomach in a sac)
• esophageal atresia (the esophagus does not connect to the stomach)

I was stunned.  How was this child going to feed?  Medical care is supportive and focuses on providing nutrition (feeding tube), treating infections, and managing heart problems.  Major causes of death include apnea (the child forgets to breathe) and heart abnormalities.  There is no cure.

My precious baby’s fate was sealed.  This went beyond my ability to care and nurture, and the medical community who otherwise could care and nurture was advising “termination.”  Even if I were to dismiss my obstetrician due to “philosophical differences” where was I going to go?  I could not give birth to a special needs child in isolation, and I wasn’t aware enough to ask for hospice care for babies.  I didn’t know such a thing as hospice care for babies even existed until AFTER I did a Google search on post-abortion grief.  Why I didn’t stumble upon these websites prior to making that tragic choice, God only knows.

The most supportive website I found was the Trisomy 18 Foundation.  There I found the raw medical facts and gloomy statistics in addition to countless stories from families who chose to carry to term and those who chose to “say goodbye early.”  It was heartbreaking.  One displayed a very Irish looking couple who chose to publish their family “portrait” that included a stillborn that was black with death.  Others spoke of the pain behind watching their children die.  One family had to travel to three states in order to find someone willing to do surgery on their child.  Not only do you have to deal with your own grief, but you have to find the strength to do battle with an unsupportive medical community quick to label you a nut.  After having read both sides, I reached the following conclusion.  Those who chose to carry to term held on to that last desperate hope of survival and did everything medically necessary to save, prolong, and extend the life of their child.  There is no cure.  Those who chose to terminate did so under the guise of love.  Death appeared more compassionate than a prolonged life of suffering and the inevitable death of their child.  The argument is similar to that of eugenics.  In both cases, the intent of the parent was based out of love for their child.  The conclusions they reached, however, were diametrically opposed.

On Thursday, August 17th I had lunch with the local neighborhood parish priest.  The first question he asked me was, “Are you sure that the diagnosis is a correct one?”  I answered, “yes” in that the CVS test examines the DNA structure of an actual tissue sample.  I explained to him the conflict I felt regardless of the choice I make.  My child was dying.  Life itself would be a struggle for him. His only purpose in life is to watch him die.  Termination seemed like the more compassionate thing to do.  But, I can’t go against every grain of maternal instinct.  This is my child.  How can a mother purposefully kill her child?  What are you asking me to do? I cannot do this.  No doctor would perform such a procedure without my consent.  How can I possibly give such consent?  He then proceeded to tell me that the “official” position of the Catholic Church is that one may allow one to die, but that one may not purposefully kill.  With that being said, he told me that he doesn’t believe in everything that the Catholic Church teaches and that some policies are just plain wrong.  He had recounted his own pain in officiating at the wake and funeral services of infants and how there is nothing one can say or do to console the mother.  There was nothing more painful to him as a priest than watching an infant in a tiny little coffin.  He told me that in making my choice, I could not isolate myself from my other family obligations and responsibilities.  I have a perfectly healthy little two-year old at home who needs the care and nurture of her mother.  I would have to consider the impact of birthing such a child on the overall family unit and the extended family that would be asked to sacrifice in order to help out in what otherwise would be my primary responsibilities.  It would be a selfish choice on my part to hold unto such a doomed child because of guilt.  When I later went back to speak to this same priest after the procedure, he told me that I did not make an “easy” choice but that I had made the “right” choice.

Friday morning, August 18th, at around eleven o’clock in the morning, my obstetrician called.  In his condescending manner he repeated my name three times and asked “so what are we going to do?”  I sarcastically responded, “Do I have a choice?”  He responded, “Not really.”  I remember asking him what would happen if I “do nothing.”  He said nobody knows.  The pregnancy would continue and I would continue to get bigger.  The baby could miscarry tomorrow or alternatively may progress to a live birth.  Every pregnancy carries an inherent risk and there are a myriad of things that could go wrong.  There are risks involved in late-term miscarriages where in essence I would experience the trauma of labor and delivery of a stillborn, and I don’t get to go home with the prize.  I was lucky in that my first pregnancy was a classic textbook case.  There would be no quality of life for this child, let him go and try again.  In his twenty some odd years of practice, he had never seen this happen twice and guaranteed that my next child would be fine.  He then gave me the number of the Department Head of Obstetrics and Gynecology, told me to call him on Monday, because he was off today, and told me to schedule an appointment for a Dilation and Extraction (“D&E”).  He went into great detail to explain how a D&E is a two-day procedure, how my cervix would have to be slowly dilated with laminaria because I was already in my second semester, and how the next day he would go in and do “it.”  I never asked exactly what “it” was, and he didn’t volunteer.  I knew, however, what the end conclusion would be.

On Monday, August 21st, I called the Department Head of Obstetrics and Gynecology.  I expressed to him my conflict in going through such a procedure.  He reassured me and said that there is no rush in doing this and that I could take some time to settle into the idea.  I sarcastically laughed and asked him how he thought that allowing the pregnancy to continue another week or two would make the inevitable any easier.  My husband and I had already discussed that if we had discovered this abnormality later in the pregnancy when the abortion would essentially mean induced labor anyway, we would have allowed the pregnancy to continue to its natural outcome.  I asked the doctor if the baby would feel any pain.  He said no, because his neural pathways weren’t developed enough.  So I told the doctor the sooner the better, get it over with, and requested that I be put under because I didn’t want to see, feel or know anything.  The appointment to have the laminaria inserted was scheduled for that Thursday and the D&E was scheduled for Friday morning.

The week long wait from the time I first received the news to the time of the abortion was surreal.  I continued to take my prenatal vitamins reasoning that I will care for my baby until “death do us part.”  My husband laughed at me saying, “What’s the point?”  He encouraged that I go out drinking.   I told him that I would not purposefully poison our baby and that for as long as this child is a part of me, he is draining my resources at a time when I need to have my faculties together.  Therefore, I would continue to take care of “us” until death do us part.  I spent most of my time surfing the web in quest of hope.  I could find none.  My husband spent most of his time either on the phone or on email entertaining calls from his rather large extended family.  Many came forth with their concern and condolences for the family; no-one came forth suggesting we keep this child.  What I found particularly shocking was the advice and counsel given to us by the elders.  When bad news hits, one looks towards the wisdom and experience gained from the elder generation.  The advice and counsel we received from my husband’s Great Aunt and Uncle was that if they had the option to abort their mentally retarded son forty years ago they would have done so because they worry about who will care for him once they’re dead.  My girlfriend thought I was spending too much time on the internet and decided to distract me by taking me to the movies to watch Pirates of the Caribbean.  That incurred the wrath of my mother who thought I would be better served going to Church and praying.  At night when the world would go to bed, that’s when I would spend quiet time alone with my baby.  I would rub my belly, cry to my baby and tell him that his mamma loves him and is sorry for about what she is about to do.  God would heal him where his mamma could not.  I would desperately pray to God for a miscarriage prior to the abortion date so that I would not have to carry through with that evil choice.  I was praying to God to let me off the hook.  Alas that was not meant to be.

On Thursday, August 24th I had a nine o’clock appointment with the Department Head of Obstetrics and Gynecology.  I remember being taken aback by his thoughtfulness.  Most doctors keep you waiting in the waiting area at their convenience.  He popped in the minute the phone call went out that we had arrived.  We followed him into his office where I observed various pictures of his four children scattered about.  I remember thinking it odd that here is a man who obviously is a father and a giver of life on the one hand and a taker of life on the other.  I wondered how he went home at night reconciling the two.  We sat chatting for a good half hour about the diagnosis and the forthcoming procedure.  He seemed more focused on my husband given that I was obviously conflicted and emotional.  He went on to discuss all those disclaimers and forms one has to sign prior to an abortion procedure.  He discussed all the things that can possibly go wrong and assured me that the risk is very small.  I stopped him point blank.  I told him that I didn’t mean any disrespect to him, but that at this point statistics don’t mean anything to me, because statistically speaking I shouldn’t even be here.  He just stared at me.  I further summarized his discourse by saying that what he’s asking me to do right now is to essentially “sign my life away.”  He nodded, “Yes.  That’s right.”  I then asked him if the remains of my child could be donated towards research for a cure.  He said he was not aware of any research towards this end.  So then I asked him if there is ANY good that can come of this.  He said, “No, not really.”

Once we got the procedural legal claptrap out of the way, he escorted my husband and me out of his office and into the prenatal testing wing where I initially had the nuchal sonogram.  That was the last time I saw my baby.  He tried to turn the monitor away from me so that I wouldn’t see, but I saw anyway.  Even at that point I recall telling my husband, “Look at the itty bitty.”  It was strange that on the one hand I was joyful to see my child while on the other hand we were planning his death.  The doctor waited until after we left the room and were walking down the hallway to tell me that the child still had a heartbeat.  He couldn’t look at me as he said that.  He escorted us into the elevator and down to the lobby where the gynecology department was.  I remember commenting on how the last time I walked through these beautiful Art Deco halls was to give birth to my daughter and the paradox behind how these same halls that birthed my daughter will now kill my son.  The doctor assured me that the next time I walk through these halls will be for good news again.  We entered the gynecology department.  My husband stayed in the waiting area thinking he was not allowed in the examination room.  The doctor asked me where my husband was.  I told him that he was in the waiting area.  He then asked me if my husband and I were in agreement towards having this procedure done.  I said yes except for the fact that my husband is more stoic than I.  The doctor then told me that I would be surprised how many couples were not in agreement.  He then led me into the examination room and returned with a woman who would hold my hand as he inserted two sticks of laminaria (oouch).  She was fighting back tears as she told me that she too had a Trisomy baby.  I was taken aback.  With all the advances in medicine today, I thought that child mortality was a thing of the past.  I never even heard of Trisomy 18 until I conceived a child with one.  And then I wished my husband and I were “lucky” enough to have conceived a child with Downs Syndrome instead.  At least HE would have lived.  One in three thousand babies are born with Trisomy 18.  The child dies, but the parents remain.  So we’re obviously out there in this world, but no-one dares broach the subject.

On Friday, August 25th I had to be at the hospital by six o’clock in the morning.  I woke up that morning in awe at how effective the laminaria was because I had already started to bleed.  My husband and I decided to take the subway into the city because parking would be a hassle.  The hustle and bustle in the admitting area of the hospital was a well orchestrated production line.  I was amazed at how many people were there waiting to be escorted for various procedures.  I signed myself in, received my hospital gown admittance package, and was settled into a cubby hole draped in hospital curtains.  There I sat, my husband stood, and we waited.  At one point, my husband rubbed my belly and said, “Bye Baby.”  Those two words opened the floodgates.  I realized this was going to be my last moment with my baby and that from this point forward there was to be no turning back.

When my number came up, I was escorted to the basement of the hospital, and I walked the path to calvary.  The corridor was wide, long, and lined with doors into operating rooms on both sides.  I must have walked for a good ten minutes at a brisk pace when I was finally led into the operating room assigned to me.  It was mighty cold in there.  The room itself reminded me of my Catholic grammar school adorned with the old-fashioned 4X4 yellow tile.  The equipment, however, looked high tech.  I noticed the sonogram machine and what looked like a vacuum cleaner.  The table itself was very narrow.  I was assigned two female nurses and one male anesthesiologist.  They worked quickly and silently.  One of the nurses appeared as if she was assigned to me.  She was a lively Asian woman who didn’t speak very much English but she appeared to go out of her way to make me comfortable.  She had a warm smile and covered me with two pre-heated blankets that she tucked in under my sides that reminded me of how my mother used to tuck me into bed on a cold winter night when I was a child.  The anesthesiologist was the only one who went out of his way to distract me with conversation.  I had so many tubes inserted into me that I wasn’t sure which tubes were for monitoring purposes, which tube was for hydration, and which tube was going to put me under.  That probably wasn’t an accident.  While the nurses were running around, the anesthesiologist remained fixed and seated behind my head.  When the doctor walked in, my last waking moment was his peering into my frightened eyes probably looking to see at what stage of consciousness I was at.  I remember thinking to myself he had nice eyes.  The last I looked at my wrist watch it was 7:30 in the morning.  I woke up in the recovery room at 8:00.

Thus was the short life of my son.  Thomas Anthony was born to heaven on Friday, August 25, 2006 somewhere between 7:30 and 8:00 in the morning.  Life will never again be the same.  Mamma loves you.

~LV