My husband and I have a wonderful, sweet, three-year-old son and he is our world. We found out that I was pregnant with our second child just before my son’s third birthday. We were scared – financially, it would be a hardship, and we were worried how we could possibly love our second child as much as our first. My husband and I sat down and figured out the financials, and began to get excited for our son to have a little sister or brother. He would be such a great big brother; loving and sweet. We took him to our 13 week ultrasound and he was excited to see “his baby.” I would lay down with my son at night to snuggle him, and he would rub my belly and talk to his baby. He would wrap little gifts to give to the baby when he/she was born; it warmed my heart to imagine my two little ones playing together.
At the ultrasound, the technician checked and said that it looked like we had a “healthy kiddo.” At that point, we were feeling pretty good; we had received our first trimester screen results (I was 43 years old), and everything looked great. We started to share our wonderful news with family and friends.
We went to our 19 week ultrasound excited to find out the sex of our baby. I even sent an e-mail to some of my colleagues that said “We have an appointment on Monday – hopefully we’ll find out who we have swimming around in there.” We had names picked out; Sean Higgins for a boy and Meara Ann for a girl. My son was hoping for a little sister at first and then a little brother. He kept changing his mind. We began our ultrasound excited but quickly realized there was a problem when, after telling us we were having a boy, the technician got very quiet and told us she was going to have the doctor come talk to us. Usually the techs were very chatty, showing us all the body parts and organs as they went along, but not this time. She was really fishing around his heart, and that made me nervous; little did I know that would be the least of our worries. The perinatologist came in and immediately said “I am so sorry, your son is very sick.” My son had ventriculomegaly (severe swelling in both ventricles of his brain), a hole in his heart, and several other physical deformities. The perinatologist had us do an amniocentesis right away. He suspected from the severity of the problems and deformities that it was Trisomy 18 or Trisomy 13, both usually fatal. He advised us that with that diagnosis, he would recommend termination. We were so shocked we were almost numb. This was not at all how we expected this day to go. I called my aunts and two close friends sobbing. The news shocked them as well.
We came back later in the afternoon and spoke with the genetic counselor. She went over all the abnormalities that had been found. A bilateral cleft lip (and probably palate); fixable by surgery. Clubbed feet; fixable by surgery. A hole in the heart; fixable by surgery. The swelling on the brain; not fixable. He could be shunted at birth, but that would only possibly prevent further damage. The combination of the anomalies is what concerned everyone though. When we spoke with our OB/GYN he recommended termination as well, as he expected a diagnosis of T13 or T18. We were devastated, but knew what our choice would be based on either one of those diagnoses. We would terminate the pregnancy.
Our bombshell came when we received our amniocentesis results a week later and there were no chromosomal abnormalities. We spoke again with the perinatologist and our OB, and they still both recommended termination. They really believed our son would die before birth or shortly after because of the severity of his anomalies. I asked my OB how it could be that our son was so sick; I could feel his kicks. He told me that even though his diagnosis was poor, I would still feel him moving. Feeling him move every day tore me apart, and I wanted to make sure we made the right decision, because all of a sudden it had become much less clear.
We decided to have a second opinion to see if anything had changed in two weeks or if, by some miracle, they had been wrong in the first ultrasound. We knew we were working in a tight time frame if we chose to terminate, since our state only allows abortions up to 24 weeks. At our second ultrasound there had been an increase in the fluid in our son’s brain. We were told he could survive, but his brain would have to be shunted at birth because of the amount of fluid and that would only alleviate further damage. The damage that would have been done prior to birth was an unknown. They believed that one of the physical deformities that had occurred was from the fluid accumulation, and that was not a good thing.
We decided to speak with my older son’s pediatrician. She was wonderful, and listened to what information we had been given, although there was no real diagnosis at the time. She also recommended termination. I am fairly certain that no OB or pediatrician on the face of this earth condones the termination of a pregnancy except in cases where they really feel it is a necessity. We even spoke with a friend that was a social worker in a hospital, who had experience with children born with multiple anomalies. She also thought termination would be the best choice and impressed upon us the life quality of a child with such severe problems. We spoke with family. Both of my aunts and my husband’s family supported us whole heartedly in whatever decision we made. After much soul-searching, and trying to decide what was best for our family, we made the excruciating decision to terminate. I knew in my heart that we were making the right decision, even though it hurt like nothing else had ever hurt. I knew in my heart that no miracle was going to make my son better. I knew I did not want my son to live a life of pain and suffering, and I knew I didn’t want my older son to live a life with no parents because we would have to spend much of our time in a hospital. It was a decision that was traumatic for all of us, even our three-year-old. Our pediatrician had spoken to us about how to talk to him about the loss of the baby. As I snuggled him at night, he would ask about his baby, and I had to tell him we would not get to see the baby. He told me he was very sad about that, and I told him I was sad too, but we would all be okay. It broke my heart to hear those words come from his little mouth.
The termination was scheduled at a Planned Parenthood-type clinic about two hours away when I was 22 weeks and three days pregnant. We walked up the sidewalk where protesters were harassing a young girl and her mother. Luckily, we escaped their wrath, as they were more focused on them, but it was an unsettling experience. We got inside the building, which seemed more like a fortress than anything else. As I sat among countless young women (some of them with their mothers), I filled out paperwork and sobbed. As I was called back for my appointment, my husband was told he could not come with me, and I was terrified. He had been with me through every part of this harrowing experience, and I felt sad and lost without him, but it was against their policy for anyone to come back with patients. After I had my ultrasound, they decided that they would not be able to do the procedure – they said I was 24 weeks along by their estimation, even though two perinatologists had certified that I was 22 weeks three days. My son’s head measurements were much larger than they should have been because of the ventriculomegaly. The young woman who was my counselor there basically told me that it just couldn’t be done. I asked her to see if they could give me a referral or some kind of additional information. She was reluctant until a more experienced counselor told her I was not terminating electively – it was for a medical reason. The whole experience at the clinic was horrifying. They finally gave us a referral to UCLA where they performed medical terminations up to 24 weeks. When I called them, they said that they had no appointments available for two weeks. That would have put us past 24 weeks and therefore made termination impossible.
We were suddenly thrust into thinking how we would deal with a critically ill child; one that would likely die soon after birth, if not before. With our three-year-old, and my husband and I both working full-time, trying to coordinate a hospitalized baby, mom with sick baby, and just life in general would be emotionally draining, challenging, and unfair to our older son. I called my OB/GYN in tears and we were told to come to his office right away. My doctor brought us back to his office and immediately called to get us an appointment at UCLA the next week. My doctor told UCLA “My patient is not doing this electively; she has a child with multiple fetal anomalies that are incompatible with life.” Hearing those words really hit home how serious my son’s health issues were. We hadn’t heard anyone put his condition that way. Our OB felt so strongly about terminating that he told us if no other options worked he would induce me. He really didn’t want me to carry to term. He was concerned about the effects on my health – mental and physical.
The following Monday, I had my first of three appointments at UCLA. The nurses and doctors were kind and empathetic. They understood that this was an impossible decision, and one that had been made with very heavy hearts. They performed yet another ultrasound, and because my son’s head circumference was about six centimeters, they were also concerned that a D&E was not going to work. If not, the only other choice would be to induce. I was scared. Scared of going through labor only to lose my baby, scared to see my son with all of his physical deformities, and scared that we were about to embark on the most heartbreaking days of our lives. The doctor who was working with me consulted with the doctor that would be in on the day of my D&E, and she was confident that she could do the procedure. The first day, I had my laminaria inserts and they gave a digoxin shot to my son to stop his heart. Although feeling my son moving had torn me up emotionally, I couldn’t bear the pain when I couldn’t feel him anymore.
The second day, they did an ultrasound again to see if my son’s heart had stopped, but I already knew the answer. I told them through my tears that I knew he had passed. They confirmed that it had stopped and they continued with the second laminaria insert, which was much more uncomfortable. I actually started laboring during the night and by the time we got to the hospital on Wednesday, I was bleeding as well. That day, 23 weeks and five days into my pregnancy, almost a month to the day of our diagnosis, I had my D&E. Physically, it was painless, not so much emotionally. We were so thankful that all of the medical professionals we dealt with were amazing and sympathetic. I asked one of the three doctors that attended my D&E to get my son’s foot and hand prints. She was able to get his feet, but his hands were too deformed, something that we did not see in the ultrasounds. When I came out of surgery and woke up, I started sobbing. My baby was gone, and the pain of the loss was excruciating. The doctor came and saw me afterward. She told me I had made the right decision – we would have had a mess on our hands. Apparently there was even more wrong than we originally knew. I was grateful for her candor, but it was still so hard to take.
After the termination, I had a strange sense of peace. I knew my son was in heaven, and he was whole and happy and healthy. I imagine he is keeping my family company and entertaining them. We have a sweet baby sea turtle urn that his remains are in. It was the only one we felt was fitting for him – free and swimming upwards toward the light. We also have a memorial tree for him — a beautiful Japanese maple with a small stone turtle that stands guard at its base. Even with that peace and our memorials to him, every day is a struggle to heal and come to some new sense of normal. Our lives have been forever changed.
We did microarray testing after the fact. We weren’t able to get it done before our termination because of insurance delays. We found that our son had chromosome duplications on q27.3 and q28, a very rare condition. They add up to a combination of MECP2 and Fragile X Syndrome. He may have made it through birth and possibly even into childhood, but he would have been severely mentally retarded and would not have speech capabilities (or they would be very limited). Most boys with q28 duplications die early due to severe bowel obstructions, failure to thrive, and continual respiratory infections. On top of that, our baby had the ventriculomegaly, which would have required permanent shunts in his brain, and the other physical deformities (cleft palate, clubbed feet, and others), so his life would have been full of hospitals, surgeries, and pain. It is also likely that I am a carrier, and because of this, we have chosen to keep our small family as is – just our three musketeers.
To say that this was the most painful decision and experience in our lives is an understatement. I am an only child. My father passed away when I was a teenager, so when my mother became critically ill, I had to make decisions about her life. That was extremely difficult, but it paled in comparison to this. I have always considered myself a pro-choice person, but never thought I’d consider abortion for myself. This experience really opened my eyes.
I hope our story can help to open other’s eyes. It is a path I hope no others have to follow, although I know, unfortunately, we will not be the last to have to make these heartbreaking choices. I have told several people that this is a pain I would not even wish on the devil. No one should have to make decisions like these; I think they go against every grain of our beings as humans, and especially as mothers. I will say that it has bonded our family even more than before though. I realize what a true miracle we have in our living son. I treasure every day with him, and I pray for both of my babies every day. Our angel Sean will never be forgotten; we will carry him in our hearts and will love him always.