Something is wrong… Why Me.. Why MY Baby…
Below is a post written by my wife, Karah. It isn’t full of stats like I would write it, it is about what is going through her head, what she’s dealing with mentally and emotionally right now. I am so thankful for her, her faith, and her strength.
Eight weeks ago we found out I was pregnant with our third child; it has been a long, long eight weeks.
There are always unknowns when it comes to pregnancy, and such excitement when you are going to get your first ultrasound and hear your babies heartbeat for the very first time. Having gone through this before with our first two children I was both grateful and excited to be able to share this first visit with Kyle and the girls. But this appointment was not like any of my others, this time my doctor saw something… something extra surrounding our growing baby. She gave us very limited information, and referred us to a doctor who specializes in high risk pregnancies. That referral has changed everything for us.
Two very long weeks after my eight week appointment with my primary OBGYN the day finally arrived. Kyle and I went in optimistic and hopeful the outcome was just a misreading of my first ultrasound, unfortunately this was not the case. The specialist (Dr. Earheart) saw a large amount of fluid (11mm to be exact) surrounding our baby’s head and going down the back. Her prognosis, Turner Syndrome. At this point I heard what my brain wanted me to hear, “You will have a miscarriage,” “Your baby will NOT make it,” “There is no hope…” I was devastated, in shock, and so very confused. Thankfully Kyle retained all of the information from this visit and was able to answer my many questions, I had zoned out and completely stopped listening as the specialist was speaking.
In the car, I desperately turned to Google (not a good idea), but I was searching for hope and answers. The information I found was heart breaking. 1 in 6,500 pregnancies are diagnosed with Turner’s Syndrome (TS), and my baby had a 1% chance of surviving this pregnancy and making it to term, a 1% chance at something close to living a healthy life. I kept asking myself, “How… Why?” Dear God, why and how am I the 1 in 6,500?
After searching and searching I found it, I found hope! I read an amazing story of a lady that was in the exact same situation as me; her baby was diagnosed with hydrops (fluid in more than one cavity on the baby) and her prognosis was also TS. After reading and reading the comments and responses I found the end, or actually the beginning of her daughter’s story. She had survived, she was alive, and she was healthy. Her genetic testing came back void of ANY chromosome abnormalities and her hydrops completely resolved themselves. Her baby was a fighter and is still living a healthy and active lifestyle. I was content. I stopped searching, I stopped googling. I was so sure the Lord put this story in my path so I could have the hope I was so desperate for.
Dr. Earheart referred us to another specialist, this time for a test called Chorionic Villi Sampling (CVS). The CVS test itself has risks that could result in a miscarriage, just trying to figure out what is wrong with my baby has a 1 on 300 chance that it could kill him/her. Thankfully one of the best doctors in the state is in Houston (and he has a better track record that the national average, being only 1 in 400). I was hesitant, but after talking with Dr. Earheart and Kyle, we decided it would be best to find out what exactly could be taking the life of our child and prepare us for what is to come. Is it Turner Syndrome, or another genetic abnormality? This test would give us the answers we so desperately needed.
Yesterday was the day we were scheduled for the exam, but due to a lack of updated blood work we had to reschedule for today. I had my blood drawn yesterday, as well as another ultrasound and a meeting with a genetic counselor. The ultrasound was again heartbreaking. The fluid levels had not only risen from 11mm to 17mm, but they also saw fluid around our baby’s heart, and possibly the bowels as well. The opportunity to talk to the genetic counselor scared me a bit, someone had told me they were going to do nothing but convince me to terminate my pregnancy.. and that it is NOT an option for me or our family. Thankfully the councillor did not suggest termination.
So today I leave the house scared for what may be another heartbreaking visit. Each new doctors appointment brings new fear and the unknown is seriously tearing me apart.
I have been given advice by a few, and personal testimonies by others. I of course do not mean any offense by this, but it is incredibly hard to hear about what you have gone through and how I should handle things the same way. Our stories are different, we morn differently, and we handle our emotions differently. I understand that miscarriages are more common than I have allowed myself to believe, but hearing a testimony about someone having had multiple and being just fine is not what I want to hear. If only you knew how many times in the last four weeks I have heard and read that my risk for miscarriage at ANY point in my pregnancy is most likely going to happen, then maybe it would be easier to understand and just offering prayer would be an easier response for you to have. My heart breaks for the many of women that have lost their babies. Although I have not currently experienced a miscarriage I wake up everyday fearing that today might be that day, it’s impossible not to when so many sources are so sure that day is coming. Each and every single day I wake up and think “today could be goodbye before I even get to say hello.”
I find myself praying constantly begging God to remove my fear, remove my doubt. I trust in Him and I have faith that He is a healing God and He is a God with the ability to do miraculous things, but there is no guarantee that healing will be how our story ends. We pray that our child’s life begins with a healthy baby in my arms, eyes open and ready to live, learn and play with his/her big sisters.
I beg God please keep this fear from my eyes as I come home and my girls run to me for hugs and kisses after each new doctors appointment, every new fatalistic finding. Please give me comfort and hope when Jovi rubs and kisses my belly and asks when our new baby is coming home. Dear God, please grant me peace in knowing that each and every day from here on out could be my babies last even though a first breath hasn’t even been taken. Please comfort me as I think about the possibility of having to let my two beautiful girls know that the Lord has called our sweet baby home to Him before we get to bring them home with us.
I cry when I am alone and I fear trying to sleep, because that is when my brain is on a constant loop. Hoping for life in a place where at any moment there may no longer be. Each and every new day brings the same fears, the same heartache and the possibility of new worries and struggles. I need peace, I need comfort, I need help. I am struggling to hold it together, to keep the tiny pieces of me that are falling apart each and every new day from spilling out in front of the innocent eyes of my girls.
I am continuing to trust God, I am continuing to hope for a change. It is what I have to do because letting this fear consume me will only be letting it destroy me.
Am I being selfish for wanting to get to meet and get to know my baby even though his/her life may be a struggle? I want to hold my baby, I want him/her to fight and be that 1%. My concern is not what genetic abnormality will my child could have but will my child make it.
We need prayer, love, and support. Please help us pray for our baby, please pray for my family, and please pray for me.
My husband’s parents have set up a GoFundMe for us, which has been a blessing in offsetting some of our additional medical costs. https://www.gofundme.com/babysouza
Trust in the Lord with all your heart and do not lean on your own understanding. Prov. 3:5-6. Love you and I’ll pray fervently. Hold fast to what is good and know that God is working all things for your good, not your happiness, but your ultimate good. Trust in His plan in this time of fear and uncertainty. Praying for courage and endurance for you all!
As one of the seven grandparents of this child in great need, I as compelled to do something more than pray and offer words of comfort. The test required to monitor this situation and enable the medical team to facilitate the best outcome for mother and child are expensive; even when partially covered by insurance.
Here is the link to GoFundMe https://www.gofundme.com/babysouza if you want to help relieve some of the great weight on this family in need.
I am very grateful for the many who are praying. I know some offer words of comfort, reassuring the parents to Trust God in this crisis. This is nice. And we all are. Yet Jesus calls his followers to action.
Acts 20:35b … remember the words of the Lord Jesus that He Himself said, ‘It is more blessed to give than to receive.’”
Mathew 25:40 And the King will answer them, ‘Truly, I say to you, as you did it to one of the least of these My brothers, you did it to Me.”
James 2:14-17 “What good is it, my brothers, if someone says he has faith but does not have works? Can that faith save him? If a brother or sister is poorly clothed and lacking in daily food, and one of you says to them, “Go in peace, be warmed and filled,” without giving them the things needed for the body, what good is that? So also faith by itself, if it does not have works, is dead.”
First John 3:17 “But if anyone has the world’s goods and sees his brother in need, yet closes his heart against him, how does God’s love abide in him?”
John 15:8 “When you produce much fruit, you are My true disciples. This brings great glory to My Father.”
I am SO very grateful for the sacrificial donations of our caring family, friends, friends of friends and complete strangers. Blessings to you, good measure, pressed down, shaken together and running over.
Please continue to Pray, Trust God, repost and ask our Heavenly Parent what you should give. Go Fund Me donations can be anonymous and as small as $5.
Kyle, no one can really understand what you are going through. This is a uniquely private and painful experience for you and your wife. And so, as someone who loves you, I want to remind you that you have the right to your own feelings. NO one should be telling you how to feel about this. You do NOT need to be standard bearers for any specific type of religious belief. You do not need to be held up as examples for good behavior. You can be as angry, or sad, or disappointed as you want. Don’t let anyone try to influence you to act or to feel a certain way. You do not need to believe that a baby with chromosomal abnormalities is a “blessing” unless that is actually what you believe. It is very insensitive for people to project their dogma onto your unborn child.
I have a lot of mixed feelings about this situation. I am very sad. I do trust in God for help. But I don’t believe in magical thinking.
The only thing I will suggest is that you and Karah try to be as kind to one another as possible. That’s it. Just be kind to your wife.
I am placing this here, and not on Facebook for obvious reasons.