My husband and I met later in life; we were almost 40 when we got married and decided to start a family. Age was a factor [in childbearing] for us; we ended up experiencing two miscarriages when we first tried. We lost a baby at 10 weeks and lost a baby at 6 weeks, so when we found out that we were pregnant a third time, it was very, very exciting for us.
Late 2017 is when we found out we were pregnant with Liam, when we got to our first ultrasound and got to see that there was actually a baby and actually a heartbeat. It was one of the most breathtaking moments that we had in both of our lives.
Because of our age and because of our previous losses, we did decide to do the non-invasive prenatal testing, and I had blood drawn and that was sent out for testing for chromosomal abnormalities. We did this to check for things but also had the expectation that things would come back just fine.
We are stationed in Japan, and it took a long time for us to get the results back. When I called to get the results, the doctor asked us to come into the office — and my heart dropped. When we got to the office, the physician said that the test came back positive for Patau syndrome (a chromosome disorder) and he discussed what that might mean for our child. It was possible that there would be significant internal and external abnormalities that include malformations of the brain, heart and the internal organs and features like severe facial malformations, extra digits on fingers and toes, and possibly malformation of the limbs themselves. The phrase “incompatibility with life” was put out there.
Lots of tears were shed at that point; I was 14 weeks pregnant. My husband and I were just devastated. Our next step was to contact a maternal fetal medicine (MFM) specialist to schedule a diagnostic test to confirm Patau syndrome, also called Trisomy 13.
Because we are stationed in a remote section of Japan, we don’t have MFMs available to us, so we took the medevac [helicopter] out to a sister base to meet with the MFM at 16 weeks, and we had the level 2 ultrasound and amniocentesis. That process was definitely scary, but I was holding on to the possibility that our baby was going to be fine. About halfway through the ultrasound, my husband held my hand and said to me with tears in his eyes, “it’s going to be okay.” And the doctor looked at us and says, “It’s probably not going to be okay this time.” I just remember that overwhelming feeling of knowing that what she was seeing meant that the news we dreaded was almost for sure true.
After she completed the ultrasound, she showed us the results — the things my son had wrong with him. He had malformation of the brain, where the majority of his brain was actually liquid, and not fully formed; a severe cleft palate and malformation of his nasal area, which meant that he would be unlikely able to breathe or eat if he was carried to term. It was hard to tell if his heart was fully formed.
Then we did the amniocentesis; those results were sent out to the United States, so again there was a lot of waiting. But through the ultrasound, we were confident that what we were dealing with was Trisomy 13 and we had to decide what we were going to do.
We were presented with options to carry to term, or to terminate the pregnancy. If we chose to terminate the pregnancy, we would have to pay out of pocket. If we did choose to carry to term, as an active service member, all of my son’s care and my care would have been paid for through our insurance, but we would also have been required to leave our home duty station in order to be close enough to a hospital that could actually care for our baby after he was born in the event that he did live. We were told that if we carried to term, to expect him to live for a few hours, that there was a possibility of him living for a few days, and that there was a slim possibility that he could live for a few months, but that the vast majority of Trisomy 13 babies die before they are two months old. Very few live into childhood.
That was something that just hurt our hearts. We were more afraid that he would live than that he would die, because we knew that him living and not succumbing to his disease prior to delivery would mean his life, his entire life, would be a fight and would be painful.
A very good friend of our family is a pediatric intensive care specialist, and he spent about an hour of his time on the phone talking to us about what Patau syndrome looks like – the possible interventions, the palliative care. Eventually after a lot of discussion and thought and research into it, my husband and I realized that that was not a life we wanted to have for our son.
I was about 18 or 19 weeks pregnant when we made this decision. We decided our son, at that point, knew the safety of my womb and only the safety of my womb, and that’s what we would want for him, to not have any experience of pain.
We had to look at the logistics of having an abortion while in rural Japan. Our clinic at our home station worked with the host nation to get us a consultation with a physician. The medicine here in Japan is good, but it is different than what we’re used to and the interaction with physicians is very limited. You interact mostly with the nursing staff, and we had to interact through an interpreter, so we were dealing with that huge language barrier.
We found out that we were eligible to have an abortion here in Japan, and that the typical type of abortion they do is a labor and delivery induction and that seemed so much better to us than having a dilation and evacuation procedure, or D & E.
If we did a D & E, he would not be a whole person when he came out so we would not be able to see him or hold him, to truly have what we thought would be closure. We wanted to be able to hold our child; we had so much love for him and had already given him a name, Liam Taylor.
In Japan, because the medicine is more socialized, the cost of the abortion was between $4,000 to $5,000, instead of $15,000 to $30,000 in the United States. Those higher costs were not feasible for us, so we decided to stay in Japan.
When we checked into the hospital I was about 21 weeks. The process is very similar to an induction at full term, except the body isn’t ready at just 21 weeks, so it took almost three days. It was very difficult emotionally and physically. On the third day, I did go into active labor and was able to birth my son. So at 21 weeks, my son was born into heaven. He was born on the 21 of April at 7:36 p.m. and he was just under 1 lb. I got the most blessed moment of my life at that time, because I got to hold my child.
Abortion is not just about getting rid of a baby. Being able to have an abortion for us meant our child, our son, didn’t have to suffer. And that my husband and I got to provide to him only safety and security. When he was born, I was able to hold him, my husband was able to hold him.
Our command and coworkers were very supportive. Our physician from base, who was not legally allowed to carry us through an abortion procedure, visited us once our son was actually born, and then stayed with us and took some amazing candid photographs of us with Liam.
Through that process, we were able to have closure and to provide for our son a welcoming into this world that would not have been possible had he been carried to term. Because we were able to terminate our pregnancy, I was able to finish out my professional tour where I was stationed, but we were responsible financially for the abortion because of the stipulations that our government put in place.
I feel blessed in so many ways that we were in Japan, because if we had been in the United States we would have likely had a D & E and not been able to hold him.
We now have a beautiful baby girl. I may only have one living child, but I am the mother of four children, three who are in heaven and one who is here on earth, and I get to share with her the story of her brother.
Hopefully through what we have experienced, we will be able to provide [reassurance] to other people that it is okay, that you are still a parent, you are still a mother if you have to make that choice. I hope one day our society will see this as a medical decision and not a political decision. I feel passionate that families should be able to choose the type of delivery that is right for them.
- As told to Sheila Cosgrove Baylis
Juliette Ruff’s story does not reflect the opinions of the Navy, Department of Defense or US Government.
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