My Mother’s Sorrow
An Angel's View

Diagnosis: Trisomy 21 and Cystic Hygroma

By Dillon's Mom

I wish I could say how I knew how my parents met but I can only tell you what my mom told me. She was almost 36 and my dad was 31. It was love at first sight for her. She knew when she met him that he was worth waiting so long for. You see she had never been married or had any children of her own. Something she has always dreamed of. They grew to love each other very much and had high hopes to build a family of their own someday. So let me tell you a little about my dad. He was previously married and has three daughters. He knew how very much my mother wanted a child of her own someday and he was willing to do whatever necessary to make that happen for her.

So this is how the story starts...After three daughters my father had a vasectomy. The Urologist was very hopeful that a reversal would be very successful. The procedure was performed about a year after they were married. All went well. In the meantime mom had seen a Fertility doctor to ensure her chances of conceiving. Everything was a go but there was concern of her low ovarian reserve. This is very typical for women in their late 30’s. Two and half years later of trying the old fashion way, mom and dad realized that things were not looking good. After an additional analysis of dad’s sperm, the doctor informed them that dad’s sperm just weren’t swimming in the right direction so they were never making it to the matured egg. Mom was pretty distraught. I believe she was in denial for so long and now they had spent so much time and money on what she felt was never going to lead into an opportunity to motherhood.

Unfortunately finances were very slim. Mom worked a full time job, dad worked up to three jobs but supporting a large household with dad’s parents and joint custody of my sisters, finances were difficult. Sure mom had insurance but after further research they would not cover additional fertility needs because dad had an elected vasectomy. She felt so ripped of her opportunity and punished for a decision that was not hers at the time. That is when my father made the ultimate sacrifice. He did some research and found a website where you can order donor sperm and perform in home inseminations yourself. Being a paramedic my dad had this one. There was so much thought put into this decision and a lot of sacrifice on my dad’s part. He really loves my mom. The decision was made.

Now how I came into the picture...It only took two tries from the donor sperm to conceive me. Mom started a journal so this is how I know there was excitement in the air. Mom always has a very regular 28 day cycle. Three days late and again there was excitement in the air. It was a typical Sunday early evening when they made the ritual to drop their girls off at their mother’s for her week of visitation. After going out to dinner mom told dad she needed to stop at CVS for something. I think she forgets how smart and in tune dad is when it comes to her cycle. He knew what she was doing but didn’t say otherwise. With a piddle on a stick and a very faint plus sign, mom was so excited but still unsure. She nonchalantly gave the EPT to dad and said, “So what do you think?” He could clearly see the excitement written all over her and he replies, “I can neither confirm nor deny, but I would say it is a plus sign”. That is how it all began for me.

Doctors’ appointments, announcements to family and friends, were just the start of it. Mom and dad discussed the sequential screenings because of the maternal age. They were realistic of the chances of possible Down syndrome but really didn’t give it much thought. They would love me no matter what. The pregnancy went great for mom. She loved having me inside her. She always told me how good I was. I never caused her to get sick, she could sleep at night now, and she said she couldn’t remember the last time she felt this good. I remember when they had their first sneak peek at me at 7 weeks old. They could see my heart beating. Mom was so amazed. Time drew closer to when I would be 13 weeks and mom would get another sneak peek at how her son was doing. She didn’t know I was a boy yet but she was soon going to find out. She went to the doctor and saw me jumping around like a little jumping bean. The technician was taking all sorts of pictures but I just wouldn’t sit still. Finally she got the one she needed. I could see the excitement in my mom’s face. She was just so elated that this was finally happening. But the news she didn’t expect to hear came. The doctor called to tell my mom that she was at high risk for chromosome abnormalities. The measurement of the skin from my neck was 5.4cm. This was more than a 50% of the thickness it should be. The doctor suggested coming in to have the CVS to determine if in fact there were chromosome abnormalities. An appointment was scheduled the next day and off dad, mom, and I went.

The genetic counselor’s that mom and dad met with were unbelievable. Compassionate, sincere, and just willing to be there through the whole process helped to put them a little at ease. My parents got another chance to see me and although I wasn’t moving around as much they were just as thrilled to see all my little body parts. The CVS was performed. The doctor inserted the needle into mom’s cervix guided by ultrasound so as to ensure my safety. The FISH test was performed and mom was told she would get the results within two days maybe even as soon as the next day. The counselor was very honest and told my parents she saw a cystic hygroma around the neck area but often times it is possible that it could resolve itself. There was of course concern about the fluid in the lymphatic which was larger than normal. All the possibilities of chromosome abnormalities were discussed primarily Trisomy 21. My parents were told the difference between translocation of chromosome 21 versus chromosome 21 not splitting properly and therefore bringing over the extra chromosome. Mom and dad left the doctor’s office feeling lost and confused. All the questions came about as to why us? What did we do to deserve this? What will we do if our baby has DS? What will his quality of life be like? That was only just to state a few of the obvious questions.

The next afternoon the call came to mom. It was confirmed that I had Trisomy 21. I remember that mom could not stop crying. Her little baby was ill. Dad came home from work to comfort mom. They loved me so much and I could tell because the next several weeks were spent researching and meeting with specialists. The counselors at the hospital stayed in touch with mom to give her guidance, support, and keep her informed of all her options. This is how mom came to learn about “A Heartbreaking Choice” website. I remember her tears through all the stories she read about other women who have had to make difficult decisions on terminating the life of a much wanted pregnancy. A decision I know my mother didn’t take very lightly.

She loved me so much that she put all her heart and soul into learning as much about my condition as she could. She had the loving support of my dad who helped to guide her along the way. My mom and dad found out all of the possible conditions I could face upon my arrival into the world. The biggest concern was my heart. 50% of babies born with Trisomy 21 develop heart conditions that can lead into surgery upon immediate birth. It was when my mom did more research about my cystic hygroma and after meeting with the Pediatric Geneticist that she learned my percentage for heart defect went up. The Pediatric Geneticist provided her with the final results of the CVS. This is when she learned that she was having a son. She always knew that I was a boy. It was her mother’s instinct that told her so. The decision was difficult but my mom knew in her heart that the life I would lead would not be the one she wanted for me. Her love for me made the ultimate sacrifice that it was best to end the pregnancy. She wants me to have peace in my life not to have a life of constant challenge and disappointment. Life is already made up of those things and she knows I deserve better than that. I think in some strange way her mother’s instinct told her the best decision to make.

My last day here...Mom was told the process to terminate would be two days but she knew the healing process would take forever. On Tuesday mom went in to meet the doctor and to see her genetic counselors again. She asked if she could have some final pictures of me for the keepsake box she was going to put together in my honor. It was during the ultrasound that she could see me in 3d and she cried for me. A lot. This is when she was told that the cystic hygroma was very large and that my little heart had lots of complications. It was most likely that I would not have made it to term. So although there was little comfort in this information it did help my parents to know that the choice they made was the best possible choice for me.

The doctor inserted the needle in her abdomen to place the potassium chloride into my heart. I know that this was truly the part of the procedure that was the most difficult for her. As my heart stopped I know that hers did too for just that brief moment. The doctor was so thoughtful and concerned that he asked my mom if she wanted to take till the afternoon before putting in the laminaria but she wanted to keep going for my sake. The laminaria were inserted into her cervix in order to help dilate her cervix. This would safe guard the uterus and protect my mom so she could go on to have future healthy pregnancies if she so chooses. The doctor told her she would feel a lot of cramping through the rest of the day and night. She did. She stayed with me the whole time and told me how sorry she was for having to make this decision but that she loved me and would never forget me. The next day my parents drove to the hospital to finally put me at rest. My mom did her best to stay as strong as she could. They wheeled her away from my dad but in some strange way I know I wasn’t quite ready to say goodbye.

My mother and father continue to mourn my passing and that is what they have shared with friends and family. It was a passing and I had heart complications. They love me so much that they want people to remember me as the wanted little son they couldn’t have. They chose a name for me and have shared with the world how much they love their Dillon Robert. Although I was taken from them way too early, they share in all the heartache of all the other grieving parents who have or are experiencing this unfortunate loss of life.

I want to thank all the counselors and team of doctors who helped my parents through this most difficult time in their life, love, and marriage. Without the support, care, and concern my parents would not have made it through this most strenuous decision that they were faced with. I love you mom and dad and know in my heart that you will always keep my life a memory in your heart.


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