Monday, February 28, 2011

Mom to Judy Amena
Born Still December 22nd, 2010
Arlington, Virginia

I became pregnant with my first child in April, 2010. My husband and I were thrilled and the pregnancy was unbelievably easy for the first several months. All of my prenatal appointment went well and I never had morning sickness or any seriously bothersome symptoms. Like every new mother, I was very anxious to see my baby, and so I did an elective 3-d ultrasound around 18 weeks. We found out we were having a girl, and I was thrilled. However, the first tech left us for a very long time during the ultrasound and when she came back in she had her co-worker with her. The co-worker was acting very strangely with us, but neither said a word about what they saw as the continued the ultrasound. When my mother asked if the baby looked okay, she simply waved her hands back and forth and said “we don’t EVEN LOOK for that sort of thing”. Although I noticed that their behavior was very strange, I was so excited that ignored it completely.

Because of the elective ultrasound and because I had been told that an anatomy scan was pretty much “just for fun” for someone like me who was so low risk, I put off getting the big scan until about 23.5 weeks. I was excited to see my little girl again and, although on some level I knew that the day could turn bad, I didn’t really think that it would. The tech didn’t tell us right away there was a problem, but after completing the scan left the room for a long time, and when she came back she handed me a phone, saying my midwives wanted to talk to me. On the phone they told me that the tech had seen something and thought I needed to have a perinatologist look at it further. I was stunned, but still thought it was probably nothing. She had had a hard time visualizing her heart – maybe they just wanted to try to get a better look at it? I had heard that this often happens, causing lots of unnecessary worry for expectant parents. However, when I hung up, the tech admitted she had not seen only one thing that had concerned her, but a cleft lip and palate along with a number of other things that just didn’t look quite right. She said I needed to see a perinatologist immediately, because at 24 weeks my “options” were going to be limited. I knew that she was saying things were bad enough that I may want to abort, and I nearly passed out.

That night I spent a great deal of time searching on the internet and there seemed to be countless disorders associated with a cleft lip and palate, many of which were associated with only minor disabilities. There were only two I couldn’t even bring myself to read about: Trisomy 13 and 18. These were considered fatal.  So when the perinatologist told me upon meeting me the next day that his main concern was Trisomy 18, I was not only frightened but even a little irritated that he would assume the worst before he even looked. There were many other things that could cause a cleft! And at first it seemed that the cleft was indeed the only thing wrong they could be sure of. Every other concern was marginal – the kidneys were a little dilated, she was a little small, her stomach looked a little close to her heart, but the doctor noted all of that could have been nothing. At the very end of the appointment however the baby suddenly moved into a good position and we saw a clear picture of her heart. “Oh…” the doctor said in a resigned voice, pointing at the two vessels coming out of it. “These are supposed to cross each other”. They were clearly parallel. It was at that moment that I really lost hope. By the time the amnio results came 10 days later I already knew what I was going to hear, but it nonetheless tore my world apart. “The results were abnormal. Your daughter has three copies of her 13th chromosome. This is not compatible with life. I’m sorry”.

Carrying her the next few months knowing she would die was the hardest thing I have ever done. I had never known that there were disorders which a baby could survive up to full term with while having no hope of long term survival and had always thought that worst case scenario would be a handicapped child or an early miscarriage. For weeks I wanted to do nothing but lie in bed crying and holding my husband. Life was so ugly and he was the only thing I could see beauty in. I was incredibly fragile and didn’t want to deal with anyone or anything. Despite the emotional trauma however, the pregnancy continued to be physically a very easy and I tried to force myself to go out with my husband every day. It was a beautiful fall and we took many hikes together and ate lunch out often. When possible, I would try to keep my emotions at bay in the afternoons and then spend my mornings and evenings crying all of the tears I had suppressed during the day.

At about 34.5 weeks, my physical condition suddenly took a turn for the worse. I came down with a number of strange symptoms such as a throbbing pain in my neck and shoulders, diarrhea, recurrent rash on my chest and arms and hives on my face, swelling under my eyes in the mornings, a feeling that my heart was pumping very hard, migraine auras, and incredible fatigue. The doctors did not take any of it seriously, and attributed it to regular pregnancy discomfort and stress. In fact, they were not taking my physical care seriously generally, and my OB appointments were spent discussing how to handle the birth if our daughter was born alive and whether or not I was seeing a grief counselor not how my body was holding up. Meanwhile, the baby was moving less and less and I bought a home heart monitor so that I could check her heartbeat every day to make sure she was still with us.

On the night of December 20, 2010 the pain in my neck became even more unbearable. The arteries were throbbing intensely and I got up several times during the night to take hot showers hoping to calm the pain. Despite my efforts it got worse and began to spread upwards into my head. The headache was the worst I had ever had but I noticed that it only hurt when I was sitting or lying down and would go away when I stood up. It occurred to me that this might be a blood pressure issue and when I went to the hospital they confirmed that I had developed severe preeclampsia. They also found that the baby’s heartbeat had stopped. She had a strong hearbeat the previous morning and I had felt her kicking hard just that evening so I knew she must have passed during that miserable sleepless night. My husband, mother and I wept together and I then I tried to focus on preparing myself for the pain of delivering my sleeping daughter.

The next couple of days were a blur. Because of the preeclampsia, they put me on magnesium for the delivery to prevent seizures. The magnesium made me feel somewhere between excessively drunk and hungover and I could barely focus my eyes on our daughter during the limited time I had with her after her birth. Thankfully, we had arranged for a volunteer photographer to come through Now I Lay Me Down To Sleep, who took many beautiful photos. As difficult as it was to know that I was carrying a child who would die, I was so glad to have the time to prepare myself emotionally somewhat for delivering my baby still. Although it is impossible to ever be really prepared to lose a child, this at least allowed me to better appreciate the limited time I would have with her and to arrange for the photographer. My husband, mom and I all held her until her poor little body started to bruise too badly and we had to say goodbye.

After keeping me on the magnesium for another day and a final day for monitoring I was told on Christmas Eve that it was time for me to go home. I did not want to go. I couldn’t begin to think about celebrating Christmas this year and I knew that something was still wrong. Part of me was afraid to leave the hospital. But the doctors thought I was ready to go, so I left the hospital to be with my family for the holiday. That first night home however I woke up unable to breathe with a wet, pink cough. I couldn’t sleep because I couldn’t lie down so I decided to get up and take some Robitussin. It didn’t help, nor did all the time I spent Christmas day sitting with my head over a boiling pot of water. So, with the prospect of another sleepless night looming, I decided to go into the hospital.

Although at first they suspected that I had pneumonia, after running some tests the doctor told me that I had developed something called peripartum cardiomyopathy (PPCM), a mysterious type of congestive heart failure affecting pregnant and recently pregnant women, and that he was “concerned about future pregnancies”. With this, my world went from unbearably bad to even worse. The immediate risk to my life seemed minor compared to the risk of not having any living children.

I appear to be physically healing now and am doing my best to remain positive, but it is not easy. I am trying my hardest to appreciate what I do have, especially my wonderful husband, and to not allow myself to worry too much about the future and the decisions I will have to make. I know the pain of losing my daughter will always be there, but am focusing on taking things one day at a time.

You can contact Jillian at


Anonymous said...

I am so sorry for your loss. I lost my first child to Trisomy 13 in August 2007. Feel free to contact me.

Melissa said...

I am so sorry for your loss ((hugs))

Anonymous said...

How very sad. They should have taken you seriously when you first developed symptoms of pre-e. I'm so sorry about your daughter, and about the cardiomyopathy. I hope you can find peace.

Anonymous said...

My neice was born sleeping on July 20, 2010. I know your loss and I am sorry. There are options. You do not have to fear. A child may not be born of your womb however, it is your love and the time you give that make them each and every day tied by a billion steel cables to you.

Carolyn said...

I am so sorry for your loss. We lost our 2nd child (first was a cord accident in 2004) to Trisomy 13 in 2009 at 34 weeks. Now due to my age, it is highly unlikely (and she's been gone for 18 months now). The pain of having no living children while watching those around you pop them out effortlessly is wicked cruel.

Shelby ... Stella's Momma said...

I'm very sorry for your loss! My heart breaks with yours, as I also lost our newborn daughter on December 23, 2010. She had to be induced at 23 weeks due to HELLP Syndrome, knowing she would never be able to survive with her delayed growth. We suspected she had Trisomy 21 (Down Syndrome), but this wasn't confirmed until about 2 weeks after her death.

Being released from the hospital on Christmas morning in the middle of a major snow storm with out our baby was unbearable and I can't imagine how I'll ever be able to celebrate Christmas again. Many wishes for you and your family to find some peace and comfort as you continue to struggle with your loss!

Cindyss said...

My daughter would be 19 now. She lived for 13 hours having been born with Trisomy 13. We had several ultrasounds, 7 I believe, where they would not be able to see something 1 time and see it the next time but then not be able to see something else. I remember how awful it was and how I always sensed something was wrong.

We did have a son a year later who is fine, despite the fact that I found out that I actually have a Chromosomal Anomaly where I have translocation meaning that one of my #13 and #14 chromosomes are stuck together. That means that we only have a 2 out of 6 chance of conceiving a healthy embryo. And we already had 1 son. So there is always hope.

I know it is hard - really hard. My best advice is be good to yourself, listen to your heart, do what you need to do to heal and don't expect too much from yourself. Losing a baby is a life experience unlike any other. Don't let anyone tell you what or how you should feel. Your child is your child - always!

Please feel free to contact me anytime-

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