In December 2012, my husband, Peter, and I discovered that we were expecting our second child. We were so excited to add to our family and especially thrilled to give a sibling to our 16 month old daughter, Claire. My due date was August 16, 2013, which is just 3 days shy of Claire’s 2nd birthday. We joked about how they would grow up annoyed at us for having their birthdays together.
I had a wonderfully normal and uneventful pregnancy. At our 18 week ultrasound we were over the moon to find out that Claire would have a little sister. (We secretly were hoping for another sweet girl!) During our ultrasound the technician discovered a cyst in the baby’s brain. We met with my doctor who assured us that this happens all the time and it was probably nothing. We heard the words Trisomy 18 for the first time and again were assured that they did not think this was the case. My doctor sent us to have a Level II ultrasound to make sure everything else looked okay.
Peter and I were nervous, but not too upset. We knew that the odds were against this diagnosis and the doctor was so reassuring that everything was normal. Besides, you never think that something like this can happen to you or your baby. The maternal-fetal specialist studied our ultrasounds thoroughly and again reassured us that she looked great. All of her organs were well formed, her hands, feet, face, heart, everything looked perfectly normal. So, we set out happy and reassured that our perfect baby girl, Jana Kate, would be in our arms in 20 more weeks.
At my regular 35 week appointment, my doctor expressed some concern about the size of the baby and sent me straight over for an ultrasound. After a lengthy ultrasound I still thought everything was fine. I knew that it was not when my doctor, the ultrasound tech, and a nurse came in the room together. My doctor told me that Jana was small, as in very small. She was measuring about 27 weeks, so that was about 8 weeks behind. I was shocked and terrified as she told me I needed to go straight to the hospital.
I called Peter, who was in Boston for work, and told him to get home as soon as possible. The first day and night in the hospital were dramatic. My blood pressure was high, I was actually having contractions 2-3 minutes a part, and at one point came close to a c-section when the baby’s heart rate dropped. The next day things settled down a bit and we got to talk to the specialist who had done our Level II ultrasound 17 weeks ago. We were basically given two probable diagnoses either Jana was just severely growth restricted from lack of flow from the placenta or… she had Trisomy 18.
We did an amniocentesis to see if we could rule out the trisomy. It was a Friday and we had to wait in the hospital until Monday for the results. On Monday our worst fears were confirmed. Our innocent perfect baby girl was diagnosed with T18. Through our shock and tears we were told that most likely our baby would not survive birth, minutes or days at most. After five days in the hospital I was sent home to carry my Jana angel to term.
Just eight days after leaving the hospital, on July 23 at 7:00 in the morning, my water broke. I was terrified and was not ready for Jana to leave my tummy. At 2:13 pm I delivered our beautiful Jana sound asleep. Peter and I held her and kissed her through our tears. Overall it was calm and she looked so innocent and peaceful. She was only 2 pounds 9 ounces, but she looked just like her big sister.
We held Jana, rocked her, and kissed her for hours. Our nurses, who will be forever remembered to us as Jana’s Earth angels, helped us to bathe and dress our baby for the first and last time. We had a wonderful photographer from Now I Lay me Down to Sleep take pictures of us with Jana. I am writing our story just three days after Jana’s birth. So, I haven’t even seen the pictures, but I know they will be a lifetime treasure.
It is amazing the impression a tiny little soul can leave in our hearts. She was barely with us, but we know her so well. You can not imagine, unless you have been through it, that you can miss someone so much that never even got to be with you. I will always treasure our time together for the 36 weeks I was blessed to carry her with me. Jana will forever be a blessing to our family. Forever loved and missed.
To my precious girl:
My sweet Jana, I can just imagine the joy that you would bring to our family. I could get lost in imagining you here and missing your precious face. I treasure the time that I got hold and carry you and I will love you every minute until I am holding you again!
All my love, Mama