The Cold Hard Truth

Today is the day we meet with everyone and talk about our results from yesterday. We go up to our nesting room in the Fetal Care Center. We are a little early so we sit and watch tv and blog. First we see Erin, the genetic counselor. She asks us a TON of family history questions. For most of them we have no idea. It's just not something our families talk about. We are gonna have to make everyone in our families write down their health issues so we know for the future! After we answer her questions she tells us a little bit about our results, kind of prepping us for our meeting with all the doctors. First she talks about our Fetal Echo and says that everything looked perfect with baby's heart. (YAY) She talks about our amniocentesis results and says there are 46 normal chromosomes. No doubles, missing or broken ones.  (YAY again) Erin then tells us that the ventricles in our baby's brain are measuring 14 mm and 20 mm. Anything over 10 mm is concerning. She moves on to talk about the lesion on our baby's back. She tells us it is myelomeningocele the most severe form of Spina Bifida. According to the ultrasound, the opening is pretty large..... Ugh. It is so hard to say!! Ok the cold hard truth. Our sweet innocent little baby has a lesion that starts at T10 and ends at the sacrum. For those who don't know what that means, hang on. Caryn explains more. Erin makes sure we are ok with this information before she leaves.

Then we meet Caryn. She is a nurse who works with Spina Bifida patients. She can talk about what we can expect for the future. She gives us a book for children with Spina Bifida and flips through it pointing out the circumstances we can definitely expect for our baby with a T10 lesion. She says that since the lesion is so high, we are definitely looking at a high level of paralysis. Like from the belly button down. Then she says the words I am most afraid of. Never going to walk and wheelchair. My heart breaks. She continues to talk but all I can think about is how my baby will never play Ring-Around-the-Rosie with Kaleya and Reyden. They'll never feel the grass between their toes. Never twirl around to show off her pretty dress or run for the end zone. They'll never run and tackle Daddy to wrestle on the floor. It is so hard to hear that your baby will never take their first steps! She says just because we saw baby kick their legs in the womb does not mean that baby will have function of them after birth. She talks about the need for a catheter because of lack of bladder control. We also learn that our baby has kyphosis. Kyphosis is like scoliosis but instead of an "s" curve it curves out. The angle is so severe it disqualifies us for fetal surgery. :-( Caryn apologizes for the news and leaves  us until the meeting.

Once she is gone I let go of my brave facade and cry. I cry for my baby and the difficult future ahead. And I cry for myself. Joshua pulls me into his arms and holds me. It's very hard news to absorb. Both of us are completely shocked. Again this is not what we were expecting to hear! Every time someone talks to us the news gets worse! After a little while I feel a little better and start to accept the news. We decide that we CAN do this. It doesn't matter the outcome we love this baby and will do all it takes to give them the best life.
We meet with the doctors and each one tells us what they do. The first doctor goes over our ultrasound. He confirms the size of the ventricles and that our baby has a Chiari III malformation. The next doctor shows us the images from our MRI. It was really neat. It ALMOST made it feel worth the pain lol but the doctor shows us the open lesion and we can also really see the kyphosis. They tells us it disqualifies us for fetal surgery. Our baby's spine curves at a 65 degree angle. The don't do fetal surgery on babies with more than a 30 degree curve and normal babies have a curve that is in the teens. So another thing on our baby that is pretty severe. The neonatologist talks about what we can expect our baby to go through after birth. Babies with Spina Bifida have to be handled more delicately than normal babies. Then the neurologists talks about the multiple surgeries that will happen after baby is born.

They make sure to tell us they can't predict the future. All they can tell us is the information based off of similar patients. Our baby could defy the odds and walk. While the odds seem against us there is always that small sliver of hope.