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29-8-2009 - Ethan Santiago S. story

My mood while writing this blog: searching for acceptance

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October of 2008, my husband and I decided to try for our 3rd and last child. It wasn’t a decision I was too sure about, but I knew I wanted another baby and I knew I would live to regret it if I never had my 3rd child. My husband on the other hand always wanted a big family and it was he that would forever talk about having another child.

We tried that October but I had just missed my ovulation, and since my cycle was about 43 days long, I would have to wait till december to try again. It was the longest month of my life as we were more than eager to conceive ASAP! I was due to ovulate the 1st week of December, and we tried every day, several times a day in hopes to conceive this very much wanted baby.

December 23rd, I took a home pregnancy test and a very faint line appeared. I was thrilled! I wasn’t ready to tell the husband, I wanted to wait to tell him on Christmas, but I just couldn’t hold it any longer. December 24th, I let him know that we were expecting a very much wanted and desired child.

At my 1st prenatal visit, I learned that I had blood behind the placenta. My doctor stated that there was a chance I could miscarry. I cried and I prayed. I asked the dear Lord to please let this child survive, that I very much wanted this child and to be blessed with his birth.

A few weeks went by, I was seen by my doctor weekly to make sure the baby was alive and well until the issue didn’t seem to be any issue any longer. Around 17 weeks I went in for the anatomy scan to see the sex of the baby as well as to have some blood work to check my chances for a baby with downs.

I had no worries. But in the back of my head, I had this odd nagging feeling that somehow made me think about it much more than I probably should have been. Maybe I should have known then, that it was my destiny.

the following week, I received a phone call from my doctor. She stated that there was an “echogenic bowel” that appeared in the ultrasound. She explained different things that it could be. But when she called, she had the most “I am sorry” tone in her voice that made me feel so uncomfortable. I received the call at work, where I broke down at my desk… I then looked my self in the restroom and cried, holding my stomach and heart. It was such a heart ache at the moment. She didn’t give me my AFP results as they were not in at the moment. I was hoping to hear something positive with those results. Friday of that week, I could not wait any longer and I called the doctor for my results. She stated 1 out of 37. NO! I though, God please NO! I tried to think positive and told myself that it was just a “false positive”.

I cried everyday. I prayed everyday. I did a lot of research in the mean time of Downs, I joined different forums and support groups, though I never posted I just read other people’s experiences. I tried to find some comfort. I did a lot of soul searching as well. I talked to God. I said, God please don’t let it be, but if that is in Your Will, then let it be. I will love this child unconditionally. I learned that God doesn’t give you what you cant handle. I told my self whatever I could tell myself in order to comfort myself.

We went to a specialist twice, and both times, they didn’t see anything abnormal. We opted not to have the amnio, after all who are we to say that this child does not deserve to live just because he has downs. If this is God’s will, we cannot terminate something that was meant to be. It wouldn’t have changed anything to know the truth. We were determined to have this child. And also, I will admit. we were scared to know the truth. We found some comfort in the ultrasound, as our baby appeared to be “normal”.

I personally knew that it didn’t mean anything, that our baby could still have DS. I prepared myself just in case. I kept logging in to support groups just to read. My husband was convinced that our baby was 100% ok, or maybe this is just what he told me to not show his fear. At one point for about a month, I let it go completely and just enjoyed my pregnancy. As my son’s birth date approached, I started to worry again. It’s funny though, how all of all sudden I noticed a lot more DS people, how things related to DS started to appear. Was it all a sign? Or was I just more conscious about it?

A month before my scheduled c-section, I started to have dreams about my son. In some he had DS. I told myself, no, mo way, it is just my overly active and worried mind.

Friday August 21st, the day that God blessed us with little Ethan. My doctor started on the c-section…. I was beyond nervous. I’ve had 2 other c-sections and I do not remember ever worrying so much with the 2 others.
But they werent worries of the surgery itself. I worried about whether he had DS or not.. I was scared to death. I prayed and I prayed, PLEASE GOD NO! NO NO N O! at the same time I said Dear Lord if it is your will who am I to ask for otherwise.

The doctor pulled out Ethan. He raised him up for me to see… I tried to see if I could see something abnormal from the distance. I concentrated real hard to see if the doctors would say something about Ethan. Nothing was said… I heard the nurses say what a handsome little boy he was. I did notice his arms moving a little strange… maybe from being crammed in my belly I said to myself. After being cleaned they handed him off to my husband who then brought little Ethan to me… speechless…. he was gorgeous! OH my Goodness! Beyond belief.

I was then wheeled off to the recovery room where we waited for our little heavenly child. Instead we received a visit from the pediatrician. She walks in all serious and stern and asked about my pregnancy and complications. Yes, I told her about the echogenic bowel and the positive test results. She then let us have it, “ it appears that the baby has DS”… I took the news very well. I knew we had a good chance of that happening. After all of that, our baby was brought to us and husband was like there is no way, look at him he is perfect… I believe he was in denial.

The baby was sent off to have all sorts of test down that day. Later that day we were visited by a Geneticist, he said, it appears that the baby has DS, but until we receive the results treat him like a regular baby. I could tell my husband was very dearly bothered by all the news. I studied my baby, and I knew it… he did have DS.
I was very worried about my husbands emotional state. I worried that he would not take the news well, that he would reject the baby or not love the baby.
The whole night, my husband was very irritable and sadden. The next day he went home for a shower. He returned with a positive attitude . He said, He is my son, and there is nothing I can do about him having DS. I cant take it away or make it not be.
I thank God for reaching down to him and giving him the strength to accept it.

He had an EKG and an echo. His heart appears to be normal so far. He was feeding very well at the hospital. They let us go home that Sunday. I guess so far we have been lucky with his health, though I know we are not in the clear.

And after all these months of preparing myself, hasn’t helped to accept my reality. Maybe it’s my unstable post partum hormones that are making me feel so depressed or maybe it is the actual reality.

Part of me feels so guilty and sadden and sometimes I cant handle the truth.
Part of the truth is that I LOVE this little boy! Oh MY GOD, do I love him! I LOVE LOVE LOVE him. For a DS baby, he is amazingly precious and so sweet. My husband is totally in love with our little Ethan. And nothing is stopping us from loving him and accepting HIM. I have yet to accept his DS 100%.

I had prayed so hard that God bless us with another child, be a boy or girl… I thanked God for allowing me to carry this child and for his birth. Regardless of anything. I never felt the “why me?” Like I’ve said before who am I to say that I am too “good” to have a child with DS. I am sure all the other parents of DS children werent any any better or worse than myself.

I just find it so hard at times to accept his DS.
I am sure a lot of you can relate. We havent told family yet, we are still waiting for the chromosome study results and to meet with the Geneticist. TO learn a little more and accept it a little bit more before we share the news with the family.

I am bag full of emotions, every minute I feel something different. I fight many issues in my head.

I am more than thankful in my life, I rather have him with DS than no baby at all, which in my case it could have happened. But I find myself a lot of times not wanting him to have DS. I want more than anything for him to not have DS. But the reality is that he does.

I pray for strength and courage.

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9 Comments on Ethan Santiago S. story


lin - Sunday, 6 Sep
I work as a social worker with children and adults with downs. They are truly beautiful people, so caring and thoughtful and kind. Most of whom have full time jobs, live on their own and several are even married with children! God only blesses the best of families with these precious miracles. Congratulations on your new baby!

ebaker - Tuesday, 1 Sep
Awe Erika, as crazy as you are, you are going to be an AWESOME mommy to little Ethan. He is ABSOLUTELY gorgeous. I know you are strong enough to get through this and to be the person Ethan needs you to be. God has blessed you with the opportunity to be Ethan's mommy for a reason. Like you said you did a lot of soul searching, so I'm sure this will make you a better, stronger woman and parent. I'm wishing you all the very very best. Post more pictures of Ethan, he is so stinking CUTE!!!

xaviersmom - Sunday, 30 Aug
I was just reading your blog and it literally brought tears to my eyes. You should feel proud of what a strong mommy you are being to this precious little boy. He is so lucky to have you. I know you have no idea who I am and I hope that I have not invaded your privacy by reading your blog but I just want you to know that in a way, you have helped me. I have struggled at times with being a mom and accepting how greatly my life has changed. Not that I don't love every minute that I spend with my lil man but you know it can be difficult at times. I dealt with postpartum depression alot after having my son and this site has been a lifesaver. It lets me know that there are mommies all over the world from all different walks of life trying to do the best they can to raise their children the best way they know how. I don't know what brought me to your page but I hope we can be friends!! God bless you and your 3 beautiful children.

MrsGaunt - Saturday, 29 Aug
wow, i am amazed at how well you are taking all of this. Your child is your child regaurdless of special needs! Mothers instinct works in CRAZY ways i'm praying for you and your son! God Bless and Congrats he is AMAZING!

1ofakind - Saturday, 29 Aug
It takes an amazing person to accept this special child as you have. I admire you for not terminating the pregnancy and giving this special child LIFE. He is lucky to have such wonderful parents to love & guide him. I can imagine how difficult this must be, but I can tell that you'll both be wonderful to that little boy, like I said he is lucky to have you as you are him.Best Wishes to you and your family.

riverababy - Saturday, 29 Aug
thanks for sharing.... Congratulations on your baby!!! May God bless you thru your journey;)

Angel-baby - Saturday, 29 Aug
First of all, Congrats on such a precious little boy... My heart goes out to you and your family.. As a mom who had a baby with a chromosomal abnormality, I can relate to your feelings. I too agree that no matter what his diagnosis is or how he looks, he is perfect in your eyes and what others think shouldn't matter.. You will love him no matter what.. Just be so very thankful that you have your son and he is yours. God gave us these precious little boys because he knew we would love them and cherish them no matter what!! Good luck and I will keep you in my prayers.. It will get easier with time. Just keep loving that little boy and know that no matter what he is perfect...

mommyofharmony - Saturday, 29 Aug
You have my sincere prayers. Your stregnth is remarkable just by you being able to share your storey it shows that you are going to to be just fine and so is your son! God has already given us the spirit of power and it is our job to utalize it. You are a strong woman and can withstand anything. Your husband is a godsend and he is truely amazing and a super support system. God Bless You Both!

airolg4567 - Saturday, 29 Aug
Erikatx:Your blog has brought tears to my eyes. Thank you for being so honest about your struggles. I will pray for you and your family. May God give you strength. Your little boy is so beautiful and precious. He is so lucky to have such a wonderful mother like yourself who cares so much about his well-being. You should be very proud of yourself. You seem to be such a wonderful woman and mother with an enormous capacity to love. I wish you all the best.