Will You Let Her Go?

When I was pregnant with baby #3, I wasn’t excited but I wasn’t unhappy.  My mind was preoccupied with running after my two boys who are under the age of five and I really didn’t have time to focus on baby #3.  Some days I felt pregnant, but most days I did not.  I remember telling my family that I knew I was pregnant but it didn’t feel like it.  I even remember talking to my baby asking, ‘Are you in there’, because I didn’t feel like I felt when I was pregnant with the boys.  The aggressive progression of growth that I knew everyday when I woke up in the morning, in the afternoon, and in the evening that yes, I was definitely pregnant.  My husband and I knew this for sure, that we wanted this baby to be a girl.  I longed and wonder what my daughter would be like, ‘Would she be light skinned or dark skinned? Would she have brown eyes or green eyes like my husband? Would she have my dimples? Would she be funny? Would she be athletic or brainy or would she be both? Would she and I become best friends?’  I would love to have a daughter of my own.

The pregnancy was very different than my boys where I had morning sickness all day for the first six weeks. I couldn’t smell anything sweet without gasping. I couldn’t eat anything sweet because somehow it would over stimulate my taste buds and I would feel nauseated.  When I ate something, I was nauseated.  When I didn’t eat anything, I was nauseated.  The only thing that would help is when I ate spicy foods (which I don’t usually eat) and drank very cold water.  I would eat cheese hoagies and cheese and egg sandwiches and cheesy bread. The biggest thing I noticed is that I felt and looked smaller than I was with the boys.  I thought maybe it’s a girl this time. It’s got to be a girl.  The odd thing about this pregnancy was I was reluctant to tell people that I was pregnant.  I remember with my boys I told everyone and anyone I was pregnant.  When I was in the parks with this pregnancy, however, I wanted to tell the other moms and dads I was expecting my third child, but something held me back.  It was like I was having a ‘secret baby’ that I didn’t want anyone to know about.

Around the fifteenth week of pregnancy, I took a Cell Free DNA blood test to see if the baby had any chromosome abnormalities such as Trisomy 21, 18, or 13 and to find out the sex of the baby.  The following week, my husband was bugging me to call the genetic counselor to find out the sex.  I left her a message late in the afternoon and didn’t think much of it.  The following day, I received the call from the genetic counselor. She told me the baby tested positive for Trisomy 18 (Edwards Syndrome).  I couldn’t believe it.  She suggested I set up an anatomy scan as soon as possible to see if the baby had any signs of the syndrome.  Since I was going to my midwife the next day, I decided to do the scan that day as well. I’ve asked her what the sex of the baby was.  She asked me was I sure I wanted to know because people usually wait until the anatomy scan to see if the baby is alright first.  I told her I’ll ask my husband first and then give her a call back if he wants to know, too.

I called my husband while he was at work and told him what the genetic counselor told me.  He looked up the syndrome and I could tell in his voice that he was shocked and hurt.  My husband started reading the characteristics of the syndrome and the survival of the baby wouldn’t be good if the baby made it to term.  I’ve asked him if he wanted to know the sex and he didn’t until after the scan.  After I got off the phone with my husband, I’ve made up my mind that if the baby did have Trisomy 18, I couldn’t go through with the pregnancy.  My husband text me asking what test did I take and I called him to tell him it was the cell free DNA test.  He read that the test could be false positive and the baby may or may not have the syndrome.  I think he was trying to hold on to hope that maybe this was one of those false positives and we would find out that our baby was fine.  I, on the other hand, wasn’t so hopeful.  My motherly instincts felt that something wasn’t right and thinking back to those symptoms I felt earlier in the pregnancy, my body was telling me that something wasn’t right either.  My husband and I just hoped the ultrasound showed us that we had a normal looking baby.

December 18th around one o’clock p.m., my husband and I went to the anatomy scan of our baby.  I remember sitting in the waiting room looking at a couple of mothers or mother to be with their baby bellies.  One mother in particular belly was big enough that she must have been there for her twenty week scan.  I looked at my little pouch of a belly and noticed that I wasn’t as big as her.  Although I was 16 weeks and 1 day, after having two kids prior, my belly should be bigger.  Seeing this made me worry more.

The ultrasound technician called us to the room to get a scan of the baby.  As I laid there on the table getting ready to see our baby, I’ve imagined if the baby had Trisomy 18, we would see some deformities and I embraced for the worse.  When the technician smoothed the wand over my belly and I saw the image of our little baby, I felt a little relieved.  It didn’t look like anything was wrong with the baby.  Then the technician showed the side view of the baby’s head and pointed out that there was slight nuchal fluid in the back of the baby’s neck.  “This is a sign of Trisomy 18,” she said.

She continued with the scan.  She scanned the baby’s brain and noticed two cysts on the brain which isn’t normal.  I started to tear up and had my right arm over my head.  I remember the technician telling me to put my arm across my crest with coldness in her voice that showed very bad bedside matter and showed she was only concerned about doing her job.  I’ve glanced at my husband and saw he was tearing up; wiping small tear drops from his eyes to stop the tears from running down his face.   She scanned the baby’s legs, back, arms, kidneys, and bladder which looked normal.  Then she scanned the baby’s stomach and intestines and said there was fluid in the intestines.

“See the bright color in the intestines?  That shouldn’t be there; it should be solid.”

“What does that mean,” I asked.

“It means the baby is sick,” she says.

I started whaling after hearing those markers on the baby and was asked by the technician if I wanted to stop and get the doctor in and I said yes.  The technician asked my husband to comfort me while she got the doctor.

The doctor came in and said what she saw was the same as what the technician saw and it was consistent with a baby with Trisomy 18.  The genetics counselor came in as well and said that she hoped that I was the one percent that the test was wrong for.  She came to hug and comforted me like I did her when I was there getting my blood test and found out her seven year old son passed away suddenly this year.  I’ve asked the doctor was there any other syndromes that are similar to Trisomy 18.  The doctor said yes, but giving the Cell Free DNA test and the ultrasound, it’s most likely it’s Trisomy 18.  Both the genetics counselor and the doctor recommend the Amniocentesis test to confirm it.

“What’s the use of getting the test if the baby has it,” I asked them.

The doctor and genetics counselor said it was up to me and asked me if I wanted to continue with the pregnancy or terminated.  I wanted to terminate but asked my husband about getting the test.  My husband wanted to make sure definitely the baby had Trisomy 18 before terminating the pregnancy.  So, we agreed to do the amniocentesis.  The genetics counselor suggested to do the preliminary FISH test which the results will come back in three to four days and could help us make the decision on whether to terminate or continue with the pregnancy.

The doctor and the ultrasound technician prepare my belly to do the Amniocentesis testing.  The technician did the scan to prepare for the test and the head doctor came in to review everything that the previous doctor and the technician said.  She also mentions that the baby was about a week to week in a half behind in growth which is common with Trisomy 18.  I was asked by the doctor was I ready for the amniocentesis test and I unemotionally said yes.  The doctor warned me when the needle will pierce my uterus and I felt the sting of the needle.  I was so heartbroken and numb with grieve that I didn’t notice much of the pain of the needle drawing the amniotic fluid away from my baby.  After the doctor took about three vile of fluid, she cleaned off my belly and sat me up.  I cried so loudly that I felt like I was choking on my own air.  The doctors told us Trisomy 18 happens when the sperm or egg has an extra 18th chromosome and once conception happens, the extra chromosome is transferred to the fetus.  The doctors reassured us that it was nothing that we did wrong and it’s very rare that this will happen again if we decided to try again.

After I’ve calmed down a little I’ve asked what the sex of the baby was.  The doctor asked, “Are you sure you want to know?”  I looked at my husband and asked him did he want to know.  He said what ever I wanted to do.  I wanted to know because I was curious and didn’t want to guess if the baby was a boy or a girl.  The ultrasound technician looked up the results of the Cell Free DNA paperwork in the computer and said, “It’s female.”  I burst out a horror movie scream,” NO! NO! NO! Oh My God, NO,” as I banged the heels of my feet on the metal bottom of the ultrasound table.  I cried like I never cried before.  All the anger, sadness, expectations, and horror I let out in that scream would make a person’s heart break.  I told the doctor, “We wanted a girl so bad because we have two boys already.”

I’ve cried for about another five minutes letting my body feel the pain in every muscle, every breath of my being.  My soul felt like it was ripped from my body and I wanted to die.  I felt like this was some cruel joke.  I hated the universe for cursing our family.  I was angry with myself because I couldn’t protect her.  I thought to myself, “Maybe I’m too old to be having babies.  If I got my tubes tied and accept that I wasn’t meant to have a daughter; that my boys were enough, my baby girl wouldn’t be dying inside me right now.”

I finally pulled myself together when I didn’t have the strength or anymore tears I could cry and got off the table, pulled up my pants, and put on my coat and hat. I’ve finally drank the water that was sat out for me and my husband and I headed out of the office.  It was a quiet walk from the office back to where we parked our car about four blocks away.  The walk seems like the longest walk when you walk in silence.   When we got to the car, my husband called his job and also told his mother about our baby girl’s diagnosis.  I called my father and told him in tears about our baby.  My father tried to give words of encouragement and told both of us to be strong. It’s amazing how much a tragic situation can affect so many people and yet although they are hurting for our baby girl, it’s not the same type of hurt my husband and I felt knowing the ultimate decision, the conclusion of this chapter, is to say goodbye to the daughter that we wanted by terminating the pregnancy.

Our families were praying the amniocentesis test would come back negative and it’s something else she can be cured from.  I’ve even prayed and I haven’t prayed to God in a long time, hoping he would bless me with his grace and save my daughter.  However, I also realize if it was confirmed that my daughter had Trisomy 18, I will do right by her.  I would not let her suffer and bring her into this world where she would be in pain and going through multiple surgeries, constantly worrying about infections because her immune system would be so weak, her having a hard time breathing and eating, or worrying about her going into cardiac arrest at a moments notice.  I could not put her through that. I would not put her through that.

That weekend would be the longest weekend of my life.  Those few days waiting for the FISH result to confirm my daughter’s condition seem like an eternity.  I decided to name my daughter Angela, Angela Michelle.  I always wanted my first daughter to be name Angela because, it may be silly to some, but I love the theme song of Taxi.  When I found out the name of the song was Angela; I vowed that I would want my daughter to be named after the song.  The song is so soothing, tender, emotional, peaceful, and beautiful that I imagine the personality of my daughter would be the perfect physical embodiment of the song. It pains me that her physical body wouldn’t be able to survive the physical world and my dreams of my daughter will only be in song and not in my loving arms.  To try to get our spirits up, my husband and I decided to put up the Christmas tree and wrap presents and spend the time decorating the tree with the boys which help passed the time.  I was also mindful of the lack of movement Angela had.  It felt like she was just laying there in my belly; kicking softly on my left side only lasting a minute or two and then I won’t feel anything for the rest of the day.  She must not be well.

On Tuesday, December 22, the doctor called to confirm that Angela had Trisomy 18 in every cell in her body, meaning she had Full Trisomy 18.  I wasn’t surprised but still I hoped for a miracle.  I called my husband and told him.  My husband wanted to wait to schedule the abortion because he wanted the full report.  I told my husband that I will set up the abortion within the timeframe of the full report but if it’s later than fourteen days, I’m continuing with the abortion.  I couldn’t let her suffer more than she has to.

Wednesday, December 23, I’ve called the abortionist at the hospital and planned to say goodbye to my beloved daughter on January 6, 2016.  For the next week in a half, Angela’s movements didn’t improve.  Her kicks and or punches felt the same as they did when I first felt her movements at fourteen weeks.  The thought of my little girl dying inside me made me feel so helpless because the point of being a parent is to protect your children.  How could I protect my child from an unseen event?  This helpless feeling makes me realize there is something bigger than me, bigger than God that has control of the situation.  How can I fight something neither I nor God has control of?

On Tuesday, January 5, 2016, I met with the assistant doctor to discuss the abortion procedure.  I’ve asked the question about the baby feeling pain and was told that the baby didn’t feel at this stage. Angela may not have felt physical pain of the abortion; but how could she not feel the warmth of my womb getting colder as they pulled her small body out with cold forceps from the only home she known? The doctor did one final  scan of Angela to measure how big she was and how many dilators they would need to put in my cervix to open me up and take her out.  The doctor asked if I wanted to see the baby again and I said yes.  I look upon my small baby with her heart still beating but just lying still.  The doctor moved the wand over my belly and Angela did not resist or put up a fight.  She just laid there reluctant to move.

As I looked at my little angel, I wonder if she knew today would be the last day that she was going to be alive.  I wonder if she knew she was sick and struggling to live.  I wonder if she knew that I am letting her go because it pains me to feel her and seeing her sick.  I wonder if she will forgive me and know that I was doing what I thought was best for her.

The doctor took the pictures and went to call the nurse and the head doctor to insert the dilators. I’ve lay down as they came in to insert the dilators into my cervix.  I felt the sting of every one of those tiny, hard sticks piercing my cervix opening me up and preparing for my baby’s departure.  Afterwards, a nurse came in to give me information about the surgery, numbers to call if I experience a fever or if my water breaks before the surgery, and final arrangements for my baby.

On Wednesday, January 6, 2016 around three pm, my husband and I went to check me in for the surgery.  The receptionist looked up my name, put an id bracelet on my arm and my husband and I sat in the waiting room waiting for me to be called to the back for preparation for the surgery. The check felt so comfort it felt like I was checking in for a hotel room. We waited for about thirty minutes for a nurse to call us to the back to prepare for the surgery.  I undress, put on the hospital gown, and the IV was placed in my hand. The nurse took my vitals as I waited for the operation room to be vacant and cleaned.  The assistant doctor, who was also performing the surgery, came to give me two dissolvable pills in each cheek to soften my cervix.  As I waited for the pills to dissolve, I tried not to think about the surgery and watch comedy central on the TV with my husband.

We’ve waited about forty-five minutes and was seen by the head surgeon and the anesthetist to tell me what the plan was for the surgery and how long it would be.  When the doctors were ready to wheel me back for the surgery, I’ve kissed my husband telling him I’ll see him when I wake up.  I remember the bright lights on the ceiling as they rolled me down the hallway.  I remember telling the anesthetist assistant when I entered the operating room that the room didn’t look as scary as I thought it would.  I remember sitting on the operating table and then lay down.  I remember the assistant anesthetist giving me something to relax and I felt the effects right away.  The last thing I remember was the assistant surgeon rubbing my hand in comfort.  I remember saying to her, “I’m trying not to cry,” as I felt myself tearing up.  The next thing I remember, I was waking up with the operating team wheeling me into the recovery room.  Once the affects of the anesthesia wore off, I went to the bathroom to pee, got dressed and was ready to leave.

When I got home, I felt relieved that Angela wasn’t suffering anymore, but I also felt the emptiness in my womb and my heart was breaking.  I cried that night, lying in the bed feeling my belly knowing she’s not here with me and a void started to develop in my heart.  To this day, I still feel the void in my heart for my beloved daughter.

angel baby

I never understood what an angel baby was until I had one.

 

Some days, I see this situation as just a bad luck experience that happened and realize as I read other stories of Trisomy 18 pregnancies that it didn’t just happen to me.  Other days, I felt like I was apart of a catch 22.  I felt the universe was telling me, “I will grant you the daughter you asked for but the catch is she will be very ill and maybe not be born alive.  If she is, she will have severe physical and mental conditions that will make it hard for her to live a normal life.  She will need multiple surgeries, a feeding tube, breathing tube, and have heart problems.  It will break you and your husband’s heart to see her go through so much pain knowing there’s nothing your can do about it.  Do you still want a daughter or will you let her go?”

I get the question, “Are you going to try again?”  It’s not an easy question to answer because there is no right answer for me.  Some people would say, “In time you’ll get over it and move on.”  How could I get over the biggest, the most painful heartbreak that I could endure in my life?  Some days are easier than others and although the pain of her lost lessens by the day, I can still feel the ache in my heart everyday…that will never go away.

My daughter wanted to be with our family.  She didn’t know that her soul would be in a body that wouldn’t function properly to live a fulfilling life. She wouldn’t be able to walk or talk on her own. She would not be able to breathe and eat on her own. If she lived past a year, she would be mental retarded and stuck in a state of mind of a six month old.  She wouldn’t be able to appreciate the feelings of sadness, anger, happiness, love, confusion, frustration, empathy, or any emotion that we take for granted which make life strangely beautiful.  She would never live to her full potential and knowing this broke my heart. I wanted to take her pain away not be the person to give her pain.  I wanted her life to be easier not harder.  It hurts me so much that I had to let her go because…I wanted her here, too.