31 Letters to the New Mom of a child with Spina Bifida Day 1: Getting the News

Day 1:  Getting the News

Dear Momma,

I remember the day that I received the call from the doctor’s office.  It was a voicemail to be exact and the nurse said, “There were some concerns with your blood work and we are going to refer you to another clinic for further evaluation.  Please call the office on Monday morning to schedule an appointment to speak to the doctor.”  
That message was on a Friday and when I tried to call the office the doctor had already left for the day and the nurse was not allowed to discuss with me the details of the complications, simply that I had high levels of AFP(alpha-fetoprotein).  That was a long weekend!!  We were referred to another clinic in Virginia for an ultrasound and further evaluation.  Up until that ultrasound there were all kinds of scary thoughts that went through my mind but they were balanced with the hopes that maybe it was twins, or they got the gestational age wrong…something, anything but what might be reality.   I remember the ultrasound tech being so nice; I remember when she told us it was a girl.  She didn’t say anything about my daughter’s diagnosis; we went to the genetic counselor’s office to wait for the final verdict.  I remember sitting in a comfortable chair close to a trash can, because I suddenly felt nauseous.  When the counselor lady came in and told us our daughter has Spina Bifida and Hydrocephalus, I sat there, stunned. The room was spinning and I looked at my husband.  He held my hand and looked down at the floor. I wanted to cry but I couldn’t.  The lady kept talking but all I could hear were muffled voices and she handed us a card with info about the MOMs Study in Philadelphia and told us to make a follow up appointment for the amniocentesis.   It felt like someone had “sucker punched” me in the gut and I struggled against the urge to vomit.  When we left the office that day we didn’t know much, all we knew was that our daughter had a condition we didn’t know anything about and that there wasn’t anything we could do to change it.  It was the first time, and unfortunately not the last time that I had that helpless feeling.  There was a beautiful little girl living and growing in my belly, she was going through so much and yet I couldn’t take her to the doctor to get the “boo-boo” fixed, I couldn’t even hold her yet.   I think it was the quiet of the ride home that unlocked the tears.  We both knew there were not any words that could fix it now.  So my husband held my hand as I looked out my window and I finally cried. 

So, new Momma, I know your heart is breaking, you may be confused and angry; I want you to know I’ve been there and it hurts, bad.  You need to know that even though it hurts today, there will come a day when the sting of the pain is not as sharp and that there is hope.  Until that day comes my prayer for you will be: 

Dear Lord,

Give this new Mom comfort, strength and a peace that surpasses all human understanding.  Wrap her in your grace, mercy and love, especially when she is angry with you.  When she doesn’t understand give her and her husband clarity and discernment to make the best decisions for the little life you have entrusted in their care.  I pray that You will bring people into her life that will support her and hold her up with encouragement.  In Jesus’ name. Amen. 

 

With Love,

Sherry

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