Saturday, June 30, 2012

June 30, 2012

This long post will contain my most recent and relevant thoughts about Baby Hudson. It will be long because I think I've thought every thought about Spina Bifida (SB) I can think over the past week since I've found out about our sweet Baby Hudson's condition. There is an incredible wealth of knowledge out there about SB along with the experiences people share about themselves and their children.

Probably the biggest thing on my mind right now is the option for Fetal Surgery. It's a relatively new practice for fetuses with severe birth defects where doctors can open the mother's uterus and perform surgery on the baby while in the womb. My initial thought was NO. There are several risks involved that scared me, the biggest risk being preterm birth. The surgery is performed between 19 and 26 weeks and delivery happens, on average, 10 weeks after surgery. Mothers are put on modified bed rest to minimize the possibility of going into labor. The closest surgery location is in San Francisco. Well, as fate would have it, Isaiah and I had a trip to San Francisco planned for the following week. Over the next few days we did a lot of research and decided to schedule a visit to the Fetal Treatment Center in SF to meet with people and get some questions answered. We also came into contact with a friend of Isaiah's who had the prenatal surgery in SF a few years ago. ( She shared a lot of reassuring information and SB resources with us. Her most comforting words: "Just know that pregnancy is the hardest part of having a child with Spina Bifida - there are so many unknowns. It gets much better after they're born! I always wondered why so many women blogged tons when they were pregnant with their Spina Bifida baby, and then hardly at all after they're born. It's because it gets easier!" Our outlook on Fetal Surgery changed when we realized there is a lot of hope for our child. The surgery will give him a 40% less likely chance of needing a shunt--that's huge!--by reversing the effects of the Chiari II malformation during the second half of my pregnancy. It could also increase his mobility by halting the spinal cord exposure, though it obviously cannot erase the nerve damage that's already been done. Knowing the risks and understanding the surgery is not right for everyone, we started to feel that it could be right for us and for Baby Hudson.

This past Thursday we went to the Fetal Treatment Center for an ultrasound, a prenatal consult, and an echocardiogram. The ultrasound and echo would give us a good idea of if we even qualify for the surgery and we could move forward with our decision-making from there. The ultrasound showed Baby Hudson could have a relatively high lesion (though he wouldn't move much to let the doctors see his spine very well) and mild fluid build-up in his ventricles. Typically a higher lesion means less mobility. While this is not good for the baby, it means the SB is "severe enough" to qualify for surgery. Another qualifier is that the echo showed Baby Hudson has a completely healthy heart--the first good news we've heard about our baby in a while. Other tests we still need to do to qualify for surgery: Amniocentesis showing normal chromosomes; MRI showing fluid build-up in the brain and severity of the Chiari II malformation.

Our thoughts now?
  • We're moving forward with prenatal surgery!
  • I am terrified of having a hip to hip incision and scar, not to mention the other effects of surgery
  • I am excited to possibly help Baby Hudson's future
  • I need to tell my principal I probably won't be teaching this year
  • Bedrest for 10 weeks?!
  • How am I going to find "support people" to watch/help me during bed rest?
  • AAAGGGHH!!!!
  • Wow, we are so blessed to live in this time of medical advancements
  • Keep us in your prayers!

For a while I only thought, "This is going to be so hard for me...Having this child will be such a trial for me..." Now I'm thinking, "This is going to be so hard for my child...He is going to have this trial for his entire life." He will never know life without SB. Can you imagine that? Somehow I'm going to have to explain to him that he was just born with Spina Bifida and will always have it and I will always love him unconditionally and sometimes because of it.

It's funny how this all came about. Just last week--maybe it's been two weeks now--I was praying for two things: First, I wanted to love my baby more. Since he was making me sick and tired and his arrival is so distant I wasn't feeling much love for him. I didn't even know he was a "him" yet. Second, I wanted to love my family more. Miraculously, God found a way to kill two birds with one stone. The minute I found out my baby could be sick I wanted to love him and care for him so much. I wanted to do whatever it would take to help him be comfortable and happy. And I wanted to tell my family everything because I knew I would get their immediate support and love. Now there's a lot of love going around our family. Isaiah and I love each other more than ever. Our immediate families are supportive and hopeful. My extended family has reached out with their words of encouragement and their prayers. I hope Baby Hudson can feel everyone's love as much as I do.

Friday, June 29, 2012

Spina Bifida Diagnosis

Hey Family and Friends,

Yesterday was a big day for our new family! We had the opportunity to go to the Utah Valley Maternal Fetal Medicine clinic to have an ultrasound of our baby. My understanding, going into the appointment, was that I was there because my blood tested high for the Alpha-fetoprotein (AFP). AFP is found in the baby's blood. If there is a neural tube defect in the baby then the AFP may leak into the amniotic sac and consequently into my blood. Since my blood tested high in AFP the doctors knew there was a higher chance of my baby having an open neural tube defect.

We got to watch our baby on the ultrasound for over an hour. First there was a sonographer who took measurements and showed us many parts of the baby (including the little boy part!) and then a doctor came in to run through the ultrasound again--this time giving us a diagnosis for the measurements and things he noticed. As it turns out, our little baby boy has spina bifida with hydrocephalus. To make a long story short, he has a gap in his spine and extra fluid in his brain.

To hear the long story, continue reading: The first observation the doctor made of our baby was his brain--our baby has two ventricles in his brain that measure larger than normal (we knew our baby would have a big head). These spaces show dark spots which are full of excess fluid. The doctor anticipates these ventricles will continue to grow which will result in the need for a shunt (tube) to be put in place to drain the extra fluid to somewhere else in the baby's body. The implications of hydrocephalus vary depending on its severity and will remain unknown until the baby is born.

Another thing our doctor took a look at is our baby's spine. Typically the bones in the spine form into a triangle /\ shape around the spinal chord to protect it. In the lower (lumbar) region of our baby's spine there are a few places where the bones formed more like a "V" and the skin is missing, leaving the spinal chord exposed in this place. SO...our baby will need surgery shortly after birth to correct his spine and cover the area of skin to prevent any further nerve damage. Due to the current spinal chord exposure there could be paralysis or nerve damage affecting the area under the spina bifida. This usually means there will be difficulty walking and problems with bladder control. Of course the full implications of spina bifida will also remain unknown at least until the baby is born or tries to walk. On top of that our baby has two little club feet right now. This can also usually be corrected with stretching/casting/surgery. I will most likely deliver my baby boy at the University of Utah under close watch of several doctors including the pediatric neurosurgeons who will perform the surgery.

It's true we're a little surprised and sad about all this news, but Isaiah is helping me to have a really positive outlook on the whole situation. There are so many blessing we've had and will continue to have during the next few months and the rest of our lives. We are fortunate to be relatively close to Primary Children's Hospital which has an excellent spina bifida clinic. I imagine we'll become close with the doctors and therapists there throughout our baby's life. We are also blessed that we decided to NOT buy a house this year. We are renting for another year (at least) in our current ward which already knows us and will be very supportive. We are blessed to be so young with lots of opportunities to have more children in the future. We are excited for what we will be able to learn and do with ALL of our children. We are most of all blessed to have supportive family members who will love us and love our baby more than any baby has ever been loved before. Thank you so much for your prayers and fasting and temple attendance in behalf of our family. We know the Lord is giving us this baby because we will be the best parents for him and he will be the best child for us right now. We already love him so much!

We love you too!

Jenna and Isaiah and Baby Hudson

Initial News

Hey Family,

Two weeks ago at my doctor's appointment I did some blood work which screens for a few genetic abnormalities. The tests are NOT a diagnosis--just a screening, and they are NOT always accurate; there could easily be false positives for any genetic test. However, I received a call today with my results. Apparently the test came back saying there's a 1 in 40 chance of my baby having an open neural tube defect (google it if you don't know what that means). I have an appointment with a maternal fetal medicine doctor on Friday at 1 to have an ultrasound to better determine if something is wrong. There's still a high chance that the baby is completely healthy but if there is a problem it could be pretty severe. We're a little nervous and are asking for your prayers for Baby Hudson.

As Isaiah put it, there's still a 98% chance the baby is healthy and a 100% chance that we're gonna love it. Thanks for your support. We love you all too.

Jenna and Isaiah

P.S. The good news is we might be able to find out the gender with this ultrasound on Friday. We'll keep you posted.