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Saturday, March 22, 2014

15 Weeks Pregnant

Today I am 15 weeks pregnant.


My husband and I joined up with another church in Detroit to go to a Nursing Home. We brought our son Tres with us and he just lit up everyone's face and brought joy to the elderly and disabled. I was asked to share with the people my miracle story of having Tres. I gave a little background into what caused me to be a barren woman and my prayer of faith for a child. I spoke of how God answered that prayer. I also talked about how this baby is a miracle baby and a gift from God. I said the baby has Down Syndrome. Then I heard several gasps. I know that the generation that I was speaking to was brought up to believe that Down Syndrome people should be institutionalized and put away from society. Then I began to speak about God's great love for us and that it is only through a relationship with Jesus Christ that we are saved.

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I feel like I have been on an emotional roller coaster all week. I wake up at least 4-6 times a night to go to the bathroom, that's normal with pregnancy; and like clockwork since Monday night, I've been up from about 3:30 am to 5:30 am just thinking about my unborn baby and all of the challenges that we will face and have had a hard time falling back asleep.

I have been reading up a lot on pregnancy with Down's babies. There are many things to take into account and there are many unknown's at this point. I know I have a 5% chance of miscarrying and a 5% chance of having a stillborn birth. Besides the heart defects, there is a host of many other problems that a person with Down's faces. Thyroid problems, problems with hearing and sight, lungs, gastrointestinal, possible Leukemia, the list goes on and on. We are sure to see many doctors and specialists after our child is born.

I talked a little bit to my husband today about how life is going to be different and how we are going to need to make special accommodations for our child. We discussed that our child will take my husband's sense of humor literally. We talked about how our child will not have a barometer and not give a second thought to speaking to others or probably hugging others (like strangers). There is no sense of "self" or "me" with a Down's person. We talked about how awesome that would be if our child were to proclaim Jesus Christ. There was mention about the intellectual capabilities of our child concerning understanding of just basic skills. I told my husband that I don't think our child will ever be able to go through a check out line to buy something and know how to give exact change or what change to expect back. I told him that our child could never live on his or her own. They would always need assisted living of some sort for life. I made mention that some people who have Down's have obsessive compulsive disorders and they do the same thing over and over and over again. That it needs to be precise. I said that our child will probably never get married and have no children. I talked with my husband and said that our child might not understand the plan of salvation, but may very well have Jesus Christ as his or her personal LORD and Savior. We agreed that the biggest thing our child will need is love. The love of the LORD and our love as well as our family and friends.




Wednesday, March 19, 2014

Results of the MaterniT 21 Test

I had it in my mind and heart to blog about my journey though pregnancy, birth and childhood with a child that has Down Syndrome. This is my story...

Yesterday I received a phone call around noon. It was my Obstetrician. He was calling me to tell me the results of a test that I took called MaterniT 21. I had this test as a result of an urgent ultrasound on a regular 12 week prenatal visit. My doctor could not find the baby's heartbeat. During the ultrasound, my husband and I could immediately see the baby flipping over and doing acrobatics. I started crying immediately because our baby was alive! 


After the ultrasound, we got a sinking feeling as the tech said that she had to go get a doctor to verify the ultrasound. A high risk doctor came in along with a nurse and the tech. He began to explain to us that the tissue on the back of our baby's neck is abnormally thick and is suggestive of a chromosomal abnormality such as Down Syndrome. Then my obstetrician came in the room and was explained the findings. They suggested that I take a blood test called MatertiT 21, which is relatively new (within the last 2 years) it would tell us if the baby had any chromosomal abnormalities and if so what they were. This test is a non-invasive maternal blood draw.  I took the test 2 days later. The results wouldn't come back for another 7 business days...
That brings me to the phone call that I received yesterday around Noon with my Obstetrician...
I was literally on Facebook looking at a video about a woman who is pregnant with a baby that has Down Syndrome. I was about mid-way through that video when the obstetrician called. (This is a link to that video: www.youtube.com/watch?v=Ju-q4OnBtNU&t=3s 
When I heard that it was the doctor and not the nurse that was on the phone, I knew he was going to give me some serious news and I would have to take notes because I wouldn't remember all that was said.
He began to speak about the ultrasound and the findings of the tissue on the back of the baby's neck being thicker. He said the test does show the baby has Down Syndrome. He said the test is over 99% positive at detecting chromosomal abnormalities and he doesn't know of any false-positives. He said to verify this test (because it's relatively new technology)  he had to offer an option for an amniocentesis later this week if I wanted.
At this point, I almost started to cry. I held back the tears and told myself I had to hold it together and I could cry after the phone conversation.
My doctor gave me three options. He said option #1 would be that I can accept this and what ever happens, happens. Option #2 would be to terminate the pregnancy and he began to talk about that until I interrupted him and said, "My husband and I prayed for this baby before it was even conceived. This is a miracle baby and I wouldn't dare even think about such a thing." He said option #3 would be to go ahead with the amniocentesis and get a more formal opinion.
I told him that I would not have an amnio because I didn't see the point with a test that has over 99% accuracy (See update below), I wouldn't want the risk of miscarriage to my unborn baby.

UPDATE: Please do your own research and ask your doctor questions if you are looking into this to help verify a positive result on a MATERNIT21 test. I found out that there is a window of time 8-15 weeks pregnant that a MATERNIT21 test can be a false-positive. This is because the maternal cells are tested with this test and not fetal cells. They can mimic TRISOMY 21 (Down Syndrome). The suggestion after a positive result of the MATERNIT21 test is to get a more formal test, like an AMNIOCENTESIS because it tests the fetal cells and would give you a definite result. But the AMNIOCENTESIS is not without serious risks or even could cause death to your unborn baby.
HAVING THIS CHILD IS ONE OF THE BEST THINGS THAT EVER HAPPENED TO ME

A plan was established to continue with the pregnancy (of course). Meet with a Genetic Counselor. See my obstetrician in 2 weeks. Have my usual ultrasound scheduled for 18-20 weeks and have a special ultrasound scheduled for 25 weeks to check the baby's heart for congenital heart defects and go from there.
After I hung up the phone with the doctor, I completely melted down. I felt like the bottom came out! I began to cry really hard and couldn't stop. The Holy Spirit gently spoke this Scripture in 
Isaiah 54:10. "Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed,” says the LORD, who has compassion on you."
I cried even more as I thought that the Lord has compassion on me and His love is unfailing.
For the rest of the day I would cry on and off. 
I thought about my niece Carly who has Down Syndrome. She was born with a congenital heart defect and needed open heart surgery. She was in the NICU for 8 months.

Here is a photo of her sleeping...

I know that this is going to be a long hard road. If there is one thing I have, it is my faith. I believe God prepared my husband and I for this and that God will be glorified.

Some of the Scriptures that the Holy Spirit spoke to my heart while waiting for the test results were:

Psalm 46:1 
God is our refuge and strength, a very present help in trouble.

Isaiah 55:8 
“For my thoughts are not your thoughts, neither are your ways my ways,”
declares the LORD.

Jeremiah 29:11 
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

Proverbs 3:5 
Trust in the LORD with all your heart and lean not on your own understanding.

If I didn't have a relationship with God through His Son Jesus Christ, I would not be able to do this. This by far is the hardest trial I have had to experience in my 10 years of being a Christian, let alone in my life. The only thing that gets me through is my faith in God.