Why this site
On May 24, 2003 my baby Avshalom Chaim was born prematurely at 33 weeks gestation with Trisomy 18 (Edwards syndrome), breathed an hour on this world, and then died peacefully. During the time of my pregnancy all was normal until my 21 week routine ultrasound showed multiple serious fetal abnormalities. Through the internet I was able to find emotional support and medical information that helped me during the rest of my pregnancy and in my grief.
"I was 39, close to 40 when we conceived. Although not planned, we had not been using any birth control for several years. I had actually given up on the idea that we would have any more children.
I confirmed my prengnancy at "6" weeks, that is a week after my period was late. With lab results in hand I went to my OB/GYN and she did a vaginal in-office u/s and confirmed that there was a sac in my womb. She saw some other fluid in the womb and said that it could indicate a possible upcoming miscarriage, so we should wait to see if the pregnancy was viable. I scheduled a visit for another month. At 10 weeks, there was no longer the other fluid, and heart beat registered on the u/s. Game on!
My 14 week appointment was fine, baby sized okay, fluid fine. Just before my 16 week appointment I was sure in my heart the baby had died. I had bizarre chills sometimes that set my whole body shivering and teeth chattering. At the appointment, however, everything was fine. At this point I was getting more comfortable with the fact that this pregnancy might just hold. At my 20 week appointment my OB asked if I wanted a level II ultrasound. I agreed, since I believe birth plans may change if there is a higher risk situation revealed on an u/s. I had no idea what was in store for me this time.
The radiologist took a long time on the scan, and said he would tell me afterwards what he saw. At the end he explained that he saw choroid plexus cysts, enlarged brain ventricles, omphalacele (protruding intestines in the umbilical chord), possible VSD, clenched fists, and the baby boy (! I hadn't wanted to know gender, frankly!) was sizing small for gestational age. He told me that these were indicators of chromosomal abnormalities and he was referring me to genetic counseling and recommended termination since "the end of these babies is often very hard". I was sure he was lying to me. I'd already told him termination wasn't why I was having the u/s. He must be lying.
I left in shock and thought, "Downs syndrome? Do I really have what it takes to be a special needs mommy?". When I took the big medical words to the internet to find out more about what I was facing, it was quickly apparent that the soft markers were for trisomy 18, not trisomy 21. "Oh for a Downs syndrome child!" was my thought as I cried reading the prognosis on the S.O.F.T site.
I broke the news to my husband and he was very supportive of my desire to carry to term. We did have the amnio to confirm trisomy 18, largely because there were very different questions to be asked depending on the results.
The pregnancy became very difficult as I gained a huge amount of fluid. At 33 weeks my waters broke at 3 am on a Saturday morning. Plans to go to a big city children's hospital were abandoned and we called an ambulance to the local hospital.
After laboring all day with a mild induction, our son was born at 6:00 pm. He was rushed to NICU and my husband went with him. My placenta delivered as a dissolved mess, so I was wheeled into delivery to go under general anesthetics for the OB on duty to clean up my uterus. By the time I came out of anesthesia, our son had passed away.
"And the king was much moved, and went up to the chamber over the gate, and wept: and as he went, thus he said, O my son Avshalom, my son, my son Avshalom! would I had died instead of thee, O Avshalom, my son, my son!" (Samuel II, 19:1)
These were the words my husband kept thinking of the hour he was with our dear son as he struggled to breathe. And so we named him Avshalom Chaim. I had my last set of the bizarre chills the night after Avshalom died.
This community was my lifeline to sanity on many days, my distraction from just my own grief, my circle of friends who let me know that I was never alone. Our faith was never shaken, but the pain of the loss still surfaces at times. Faith is not a lack of pain, and we accept what we have been given.
Many parents who lose their T 18 child desire a memorial presence on the web. I gained so much from so many people, that I wanted to be able to give something back to the community of T18 parents. My contribution is to offer help in making websites for families of T18 children.
If you would like help making a website, please visit the contact page by clicking here.
Another purpose of this site is to be a place to list any and all family sites of T18 children. That way it is easy for us to find each other and see each other's children, hear each others' stories, to gather information and gain support. Often when a family first gets a diagnosis, there is a lot of fear of what the baby will look like. As you will see, the spectrum is great, and to a parent their child is always beautiful. However, many, many of Edwards syndrome babies are quite lovely, even to those outside the family. Seeing this can alleviate many fears for the newly diagnosed family. To view family sites, please see the families page by clicking here. To list your site, please use the contact form on the contact page. We will be honored to add your site to our list.