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type: Chromosomal
Chromosome: 18

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Tetrasomy 18p results from the presence of an abnormal extra chromosome , called an isochromosome 18p, in each cell. An isochromosome is a chromosome with two identical arms. Normal chromosomes have one long (q) arm and one short (p) arm, but isochromosomes have either two q arms or two p arms. Isochromosome 18p is a version of chromosome 18 made up of two p arms.

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Tetrasomy is a rare disorder it is known to effect about 250 families world wide.

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Tetrasomy 18p is usually not inherited. The chromosomal change is responsible for the disorder.

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Tetrasomy 18p is a chromosomal condition that affects many parts of the body. Younger children with Tetrasomy 18p have trouble feeding and may vomit frequently, which makes it difficult for them to gain weight. Some affected infants also have breathing problems and jaundice, which is a yellowing of the skin and the whites of the eyes.Additional features of tetrasomy 18p can include seizures, vision problems, recurrent ear infections, mild to moderate hearing loss, constipation and other gastrointestinal problems, abnormal curvature of the spine.

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Lillian Rose

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"'Trisomy 18.' 'Incompatible with life.' I think back to the day those words shook my pregnant body to the core and crushed the deepest parts of my soul. I quickly went to Google searching for hope. Instead, I found none. I closed my web browser feeling worse than when I opened it. I didn't understand how the baby so full of life within me could be THAT sick. I didn't understand how she was so beautiful in her ultrasounds, yet the doctors would only tell me about how 'scary' she would look.

At 27 weeks gestation we went in for an elective 3D ultrasound. I was so excited to see Lillian's chubby cheeks and her sweet face, after all, this was going to be the very first time we got to see her in 3D. All of her prior ultrasounds deemed her perfectly healthy, so we had no worries, right? I remember my biggest fear being that the last ultrasound would be wrong and that we would find out she was actually a boy. I had desired a daughter since I was a little girl. I already had a perfectly healthy little boy, despite being born at 33 weeks gestation, and now I was getting my little girl. What a perfect family!

Our ultrasound technician kept looking at Lillian's heart. I knew something was wrong. Fear fell over me like a giant black drape. My brain started getting foggy and my heart was racing. "Jeanette, what's wrong?" I said. "Well, I'm just seeing some things. I'm going to run a diagnostic and send it over to your midwife. I see some things with the baby's heart and stomach. I'm concerned she may have Down Syndrome." I honestly don't remember much after that. I was hysterical. One of my biggest fears is losing a child. We went home that day and got a call from my midwife telling me that she wanted me to go to a specialist for a level II ultrasound the next day. The urgency had me very concerned. I had been reading up on Trisomy 21, trying to learn everything I could about Lillian's possible condition. We went to see the specialist, and after a very long ultrasound, she rattled of a bunch of things they found wrong with my baby girl. "So, you think she has Down Syndrome?" "Oh, you'll be lucky if it's that. I'm thinking more along the lines of Trisomy 18 or 13." I can't even describe the feeling that I felt. It was just an indescribable emptiness surrounded by fear. And then anger. How could God allow me to think my baby girl was healthy and then take her away? How could He do that to me? It's hard for me to even type that, let alone think back to when those emotions and thoughts were so raw and real.

Over the next few months, I went through the waves of emotion. Denial, fear, anger, hope. My husband and I found a hospital that would be willing to treat Lillian after birth. We moved 2 hours from home to be closer to the hospital while juggling a high risk pregnancy, appointments, a lively 2 year old son, and the waves. It was hard. Life was so hard in those moments. My prayers changed as we went through the motions. "Please, let her be healthy." "Even if she's not healthy, let it just be a heart defect and not Trisomy 18." "God, just let me hear her cry." We did our best to survive those day. And then I blinked and it was delivery day! We hoped to have another all natural birth like we did with our son, but knew a c-section was very possible due to Lillian's fragile state. My doula and husband were there supporting me through an epidural free labor. We had the lights dimmed, music, it was peaceful. I remember the nurses being amazed by the environment we had created. The day was long and the emotions were strong but I tried so hard to be happy and excited to meet my girl. I had faith that she would be born alive and do amazing things.

At 12:58 am on August 3, a baby girl was born silently into the world. She was rushed over to a stabilization area and bagged. I remember the room being so quiet that you could hear a pin needle drop. We were all waiting. And then, she cried! It was music to all of our ears! You know those movie scenes were life is almost paused, and then something happens and it just gets loud and busy again? That's what happened that day. They swaddled my 4lb baby girl, and brought her to me. I was in awe of how beautiful she was. I remember just being totally amazed by her. Her weight on my chest melted all of the fear away and I knew she was going to live.

When I was pregnant with her, my view of Trisomy 18 was so different than it is now.
Now, my view of Trisomy 18 is this gorgeous TODDLER. It's her long auburn hair. It's her blue eyes. Her perfect little hands and her crooked pointer fingers that reach up and touch my face. It's her button nose that scoops up on the end and has the most perfect curve to kiss. It's the curls that fall at the end of her hair. Trisomy 18 to me is night time snuggles, telling her I love her a million times every day, making sure I give her a lifetime of kisses, and showing the world how perfect she really is.

Lillian is a sassy, strong warrior that has overcome more in 2 years than most people do in 90. We call her the "Trisomy 18 princess". She has had her heart repaired and is thriving! She loves her brothers and brings us an unexplainable joy. I spent the majority of Lillian's first year in constant fear of her death. Around the time of her first birthday, I realized that we are all going to die. Lillian has surpassed her life expectancy 10 fold, why was I so afraid? Tragedy could strike at any moment for any of us. And in those moments, I chose to live. I chose life for Lillian, again. I chose life for my family. We still go out and have dinner or shop. It's not every week, but it's as often as possible. We make the most of our situation. We laugh through hospital admissions. We sing through the storm. And we love more fiercely than we ever have. All because of one extra chromosome.

If you're interested in following Lillian's journey, check out her Facebook page! https://www.facebook.com/trisomy18princess

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"'Trisomy 18.' 'Incompatible with life.' I think back to the day those words shook my pregnant body to the core and crushed the deepest parts of my soul. I quickly went to Google searching for hope. Instead, I found none. I closed my web browser feeling worse than when I opened it.