Wednesday, October 14, 2009

My prenatal diagnosis (2008)

October is the awareness month for Down syndrome. I want to share our story of expecting a baby with Trisomy 21 because we were prenatally diagnosed on October, 2007. Our life went though a different path when we knew that our first child was prenatally diagnosed with Trisomy 21, but our love and faith got stronger. We never discussed if we want to keep our baby because there were nothing to discuss. My story is different because the doctors never put pressure on us for“termination of pregnancy.” They never mentioned it to us. I think that having the support of the doctors to save my baby’s life made a huge difference on how I accepted.

We were very pro-active in the way we handled the news. We became members of the local Down syndrome association the day that we got the results. I invented my own prenatally stimulation program because I couldn’t wait until he was born to do something. I told my self: You know what! There are too many things to get ready for the arrival of my son. Then, I went to shop baby books, beautiful baby cloth, cute hats, the prefect outfit for leaving the hospital, and so on. I spent a lot of time choosing the best educational and stimulating toys, including toys to strength my baby’s muscles. I had the happiest pregnancy because I didn’t have morning sickness or complications. I truly enjoyed my pregnancy!

We put all our faith in God! I had my mom supporting me as my best friend and counselor. She always told me that my baby was alright because there is nothing impossible for God. She prayed the rosary, every day for a month, asking for her first grandchild’s health and for my husband and I. She lives in Panama and I live in the USA, I never felt lonely because she always was there for me, giving support and strength on the phone.

We had support from our families, friends, coworkers, employers and strangers. Yes, Strangers! We used to received letters from a Parish in Illinois (I live in Missouri) of a prayer group telling me that they were praying for my son. We received custom made gifts for my baby (he got a prayer blanket, a prayer bear, a prayer hat and a pair of prayer booties). Catholics and Non-Catholics prayed for our son, including the Archbishop of St. Louis.

We made a decision of going through all prenatal screening and testing for our peace of mind. We knew that every second was important for Tommy’s life because we were told that unborn babies with Trisomy 21 can die in the womb or they can be premature, which is not good for a baby that already has a genetic disorder. The medical procedure for expecting a baby with a genetic disorder became tedious and overwhelming. We periodically visited the hospital. We got about 7 ultrasound level II to check our son’s development in the uterus. The first ultrasound showed the soft sings or markers for Down syndrome (fetal growth delay, calcium deposit in his heart and enlarged brain ventricles). But suddenly, everything start changing as magic. He growth improved on November, he was behind just one week. A month later, he was behind just one day. At birth, his weigh was 8 lb 4 oz and his height was 20.5" which is between 75 and 90 percentile for a newborn. Currently, his growth chart is excellent. The calcium deposit went away two month later after the first screening and during the whole pregnancy his heart function was excellent. At birth, he didn’t have heart problems. The enlarged brain ventricles didn’t increase, and for some reason, a few ultrasounds showed normal size ventricles. At birth, he did eye contact the first time I held him. He is accomplishing his milestones as any other baby. Our doctors say that Tommy pays attention, he is aware of his environment and he is curious, which it is important to learn. The ultrasounds showed improvement in his fetal development. The doctors told us by the first ECHO that he was a healthy baby boy with a normal body structure without heart defects and the possibility of not having the features on his face. The doctors always said that anything wasn’t for sure until the baby was born. The ultrasound is just a screening, not a diagnosis. We don’t know how these improvements happened, but we believe God listened to our prayers.

The last three month of my pregnancy, we spent every Wednesday evening in our doctor’s office to check our baby’s heart function and movement. Every time that we were there, Tommy used to make the nurses' job harder. He never staid in the same place. He kicked so hard that he made me jumped on the bed one day. He was very active in the womb. Now, he keeps active. He hit his head two days ago by trying to get the little guy (himself) he sees in the mirror.

After Tommy was born, he spent 13 days in the NICU because he had pulmonary hypertension. Doctors think it wasn’t related to the syndrome. It may happen because I had complications during labor. My body didn’t accept the Pitocin very well. I had contractions less than a minute apart, reducing the oxygen to the baby. The nurses tried to give me more Pitocin, but the baby’s breathing dramatically decreased. I remember the doctors and nurses running trying to stable our baby. By the third time that this occurred, I was ready to tell them “I want a c-section”, but the baby was monitored and he was alright. After 20 hours of labor, we finally had our son. Those 13 days were a torture for us by wondering if something else will come up. After he was released from the hospital, we have fully enjoyed our son. He is just like a typical kid accomplishing all his milestones, but with an extra chromosome.

Our baby boy just turned 7 month, Yahooooo! He is not showing delays right now. He has accomplished some milestones earlier. He is working on sitting without assistance, he does tripod sitting and he is able to let his hands free for a little while. Our pediatrician told us that we shouldn’t say that he is doing good for having Down syndrome because he is doing outstanding as a baby. We love our pediatrician! He never mentions anything about Down syndrome in front of Tommy because he just sees a baby.

I think the mission of my son in this world is to unify people because he did when he was an unborn baby. The exact moment he was born, there were people praying for him. We participated in the fund-raising for the Body Walk, organized by the local Down syndrome association, and we got the 7th place, but “we were the most diverse team” with donations from different states and countries, such as: England, Ireland, Belgium, Mexico and Panama. Now, People look at him an they can not resist to tell something to him, specially ladies, ha, ha, ha (a proud mom). He is adorable that you want to squeeze him. The features of the syndrome are very mild. Some people notice it and others don’t. Once, we went to the hospital and we had to tell to the nurse that he has Down syndrome and she looked at him a little bit surprised.

Nobody can predict how our kids are going to be. We can just love, stimulate and encourage them to reach their goals and they will become amazing people. We don’t know what the future grants for Tommy, but we know that he will go beyond our expectations.

I congratulate and offer my respect to all parents who have a kid with a genetic disorder because we are true examples of love, faith, care, courage and patience because we never give up, even the challenges seem impossible to conquer. I applaud to all those kids with a genetic disorder because they teach to the world what books cannot, to be true fighters for their lives.

God bless you all!


sara p said...

great post:) thanks for sharing:)

Anonymous said...

Wow, what a wonderful positive post! I can't help but think that the utmost determination and complete support of Tommy inutero paved the way for him to teach all of us the possibilties and achievements for children with Ds!♥

Elvia said...

Loved your post. I'm a mom myself of a 1.5 month old baby with trisomy 21. Being new to all this, i found myself surfing the internet more than before and came across your blog. Hi, I was surfing in the Internet for articles on bilingual children with Trisomy 21 and came across your website.
I also speak both spanish and english (I'm from Mexico) and was not sure the effects of trying to teach my baby boy Nathaniel both languages. Your blog gave me new insights and so many helpful tips. Dios los bendinga a ti a tu familia. :)

Elvia said...

Hi, I was surfing in the Internet for articles on bilingual children with Trisomy 21 and came across your website.
I also speak both spanish and english and was not sure the effects of trying to teach my baby boy Nathaniel both languages. Your blog gave me new insights.
Dios los bendiga a ti y atu familia.