Trisomy 18 awareness

March 18, 2017

Do you know why today is Trisomy 18 awareness day? March is the third month and you get 3 chromosome 18s instead of 2. Get it? 3-18? 😉  All this genetic stuff is so intriguing to me. I have learned so much just from being Hollands mom.

There are fewer than 20,000 cases a year and majority of them are girls. I always joke with Riley because Hayven and Holland look just like each other and Hayven looks just like Riley so I always tell him the extra chromosome must have come from him.. obviously 😉

Did you know Trisomy 18 is also called Edwards Syndrome? A few of these symptoms include, low birth weight, small abnormally shaped head, and birth defects in the organs that are often life threatening.

With miss Holland all we could tell that was wrong internally was her heart. Now if we were to do an autopsy and run more test we probably would have found more. But, autopsy wasn’t on our agenda. She was perfect just the way she was and there was no need to rule out any more flaws.

Edwards syndrome has no treatment and is usually fatal before birth or within the first year of life. Now, let me just tell you what I think happened. Holland knew it was my greatest wish to meet her and she knew that grandpa was dying so she made my water break (she must of known I was scared of labor so she didn’t make me have crazy contractions after that either 😉 ) on Sunday because she wanted me to see her alive and she knew her and grandpa probably wouldn’t have made it to Thursday for our scheduled c-section. Grandpa passed Tuesday and she passed Wednesday. Crazy right? Now, go ahead and think I’m crazy but I truly believe this was all part of the plan. I believe this was part of the plan before me and Riley even got married. I have a few reasons to think that so maybe I’ll share it with you all on another blog.

Most children born with Edwards’ syndrome appear weak and fragile, and they are often underweight. The head is unusually small and the back of the head is prominent. The ears are malformed and low-set, and the mouth and jaw are small (micrognathia). The baby may also have a cleft lip or cleft palate. Frequently, the hands are clenched into fists, and the index finger overlaps the other fingers. The child may have clubfeet, and toes may be webbed or fused.

Lets talk miss Holland again.. as far as physical features I only noticed 4 of all those listed. She was underweight with a small but prominent back of head and her ears were low set. She also did have clenched fists and those were the CUTEST things ever. Her tiny little fingers overlapping each other. Perfect. Every little flaw she had on her is what made her so special and so perfect.

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See that tiny little fist? Like how precious is that? Sooo cute.

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Her feet were the smallest things ever! Like the size of a quarter. They were so stinking cute. Look at her little toes? ahhh I just cannot get over her.

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(Next to the fact that I seriously need to go tanning.) Look at her snuggled up on mommas chest. All these little pictures are melting my heart. What would we do without camera phones? All the heart eyes over here! You might also notice her tiny little ear is a little bit lower and its hard to see her prominent back of her head but in all honesty… my whole family has weird big heads so truly she probably just got it from her momma 😉

Most children born with Trisomy 18 die within their first year of life. The average lifespan is less than two months for 50 percent of the children, and 90–95 percent die before their first birthday. The 5–10 percent of children who survive their first year have severe developmental disabilities. They need support to walk, and learning is limited. Verbal communication is also limited, but they can respond to comforting and can learn to recognize, smile, and interact with caregivers and others, and acquire such skills as rolling over and self-feeding. They will have many physical abnormalities that require constant care as doctors and parents work together to prevent and treat various problems.

I may have shared some of these facts with you before but since its awareness day I will share them with you again!

I’ve learned a lot going through this. I’ve learned that we are our experiences. That terrible time made me who I am today. And I love who I am. I love the women that Holland made me. I am strong because I know what it feels like to be weak and broken hearted. I am strong because I know what its like to lose someone so close to you and still survive. I didn’t know how strong I was till being strong was my only choice.

We certainly cannot control the things that happen to us but we can control the way you react to them. It’s all perception.

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This is exactly where Holland was suppose to be. In my arms. This is exactly the moment that changed everything.

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This was the first time I met and got to hold my sweet precious baby girl. When I was in the hospital my nurses told me that a lot of moms that have babies with Trisomy 18 (or any lethal conditions) don’t want to meet them or hold them because they don’t want to get attached when they are going to die anyway. That completely broke my heart. How could you not love your baby? How could anyone not want to see their baby? So that baby went their whole life without being loved all because god made them a little bit different. You carried the baby for 9 months but you can’t hold them for a little while? I feel like I need to be hired to love on babies at the hospital that get neglected. That would be the best job ever!

I gave birth to a Trisomy 18 baby who lived for 48 hours and changed my entire life.

xoxo

Tasia

2 thoughts on “Trisomy 18 awareness

  1. Tasia, your posts are so moving and so spiritual to me. Thank you so much for sharing how much you’ve gone through and how much you’ve grown from your experience with your angel baby. You are an example of love and grace and it’s inspiring how you have turned outward and tried to help others in your heartache. Thank you for your example sweet girl.

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