Bella- Part 1: A Special Needs Diagnosis

0029Today my Bella would be 8 years old, it’s hard for me to imagine what she would be like if she lived to be that old. She was like a newborn during her short 16 months on earth, so I always imagine her as my darling little chunky baby.
We had a healthy three-year-old when we were pregnant with Bella. We had planned her birth at our local birthing center. Since they didn’t do ultrasounds there, we were sent to a local hospital for our 20-week ultrasound. We were just hoping to find the sex of the baby and have an uneventful pregnancy. We took our daughter with us for the exciting day. It quickly became apparent that something was wrong when the ultrasound tech was very quiet and wouldn’t answer any of our questions. She excused herself from the room and came back with the doctor. The staff quickly ushered us into another private waiting room. The doctor and a nurse sat us down and quickly said that we were pregnant with a girl, but part of her brain was missing so it would be best to schedule an abortion. As the word was hardly out of his mouth my husband stood up and said “NO! That is not an option for us.” We start asking questions, not getting any answers, crying and feeling like we’ve been punched in the gut. Needless to say, we were now in the high-risk category and our life was forever changed.   (See The Ultrasound and Goodbye Birth Center, Hello High Risk! )
Over the next few months, we had numerous ultrasounds and tests. I wrote more about her specific measurements HERE . By the time it was time for her to be born we knew she was missing a small part of her brain, she didn’t have normal eye development and she had hydrocephalus. There was a possible diagnosis of Dandy-Walker at this point. We did what we could to prepare ourselves with what information we had, we toured the NICU and began to brace ourselves for the tough times ahead. (See Touring the NICU) We started gathering our resources. The NICU social worker shared some places for us to start. We began to look into what services were offered in our state for families with special  needs.
Personally, I really struggled with the idea of having a C-section. I was in denial through most of my pregnancy that a Cesarean was nigh. It took a lot of mental preparation for me to be okay with the idea of a Cesarean. There is a mourning process you go through when you have a special needs diagnosis. Every parent envisions their newborn being healthy and growing up..taking their first steps, saying their first word. I was mourning the loss of my healthy baby girl and all of the visions that come with that. I was also mourning the natural, peaceful birth I had envisioned. I struggled seeing healthy babies in the grocery store. I took up the habit of wearing my sunglasses inside the stores, because I never knew when the tears might begin to flow. It became a joke with my husband and daughter, they would comment how my nose was getting red, so they knew I was crying. The sunglasses trick is still one I like to use.
It’s important when you receive a special needs diagnosis that you gather all of the information you can get on the topic: research, research, research! You will become the expert for your child. You will feel at a great loss after the diagnosis, but doing research and gathering your information will help feel like you are at least moving forward and doing something. In our case, there were no books, only a few dismal case studies online. Our real learning came from chatting with other parents online. It’s really tough to be prepared for something when you have so little information. I look back  now at how little we knew at the time, we didn’t even have the correct diagnosis for our sweet baby girl. I”m so thankful that it’s becoming easier to diagnose and more research is being done on Walker-Warburg Syndrome. I”m so thankful that there are support groups online, the Walker Warburg Syndrome Facebook group has become a valuable resource for families with this diagnosis. It’s great to have parents to share your stories, gather information and give and offer support.
Our family and friends were very supportive through this tough time. It’s important to share your special needs diagnosis with friends and family. It’s true that some friends and/or family members may not be able to handle the news. They may need to go through a mourning period themselves. To be honest, so people will not know how to deal with the news and may not be able to continue to be in your life.  But it is also amazing to see the friends that will step up and go out of their way to be there for you and support you when you most need it. Filling our freezer with healthy, easy to prepare meals and offering childcare while went to doctor appointments were things we found most helpful.  Siblings to children with Walker-Warburg Syndrome don’t have it easy. We did our best to prepare our then three-year-old. We shared things with her on her level, but there was no way really for us to prepare how hard things were going to get. (See What’s a Big Sister to do?) We spent extra time with her before Bella’s birth, because we knew things were going to be very hectic afterward.  We also talked about the changes that were soon going to take place so it wouldn’t be a surprise to her.
Have you or a family member had to deal with a special needs diagnosis? What have you found helpful?

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I Quietly Put My Hopes To Rest

Welcome to the June 2012 Carnival of Natural Parenting: Embracing Your Birth Experience
This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Code Name: Mama and Hobo Mama. This month our participants have written about at least one part of their birth experience that they can hold up and cherish.
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Getting ready for the Cesarean

I had previously written about my birth experience with  my special needs daughter, Bella. I recently went back and read the post and  I was surprised to find it so clinical and dry. I explained the step by step procedures of what happened that day, but I left out a very important part of the whole process; my emotions. Let me assure you there were plenty, one on top of the other, all swirled together and shaken.

 I had a wonderful drug-free, natural  hospital birth with my first daughter. I was planning a birth at our local birth center for our second child, Bella. All was well until we had our one 20 week ultrasound. Our life changed forever that day. We were in shock when given the news that our baby girl was missing part of her cerebellum, and she had severe hydrocephalus.  We later learned her full diagnosis would be Walker-Warburg Syndrome. Needless to say, we were now thrown into the whirlwind of a high-risk pregnancy and birth. “Goodbye, birth center!” and “Hello, Cesarean!”
I really was in denial for quite some time. I held on to the slim hope that a vaginal birth would be possible. I would ask at each appointment about the possibility.  It was clear as we approached our due date that I had to accept and make peace with a Cesarean birth. Bella was born with a head with the approximate size of a 3-6 month size baby. This was one of those situations where a Cesarean would save both of our lives. I had to accept it and move on.
I suppose because of all of the traumatic experiences we were going through due to Bella’s circumstances I came  to view the Cesarean as more of a blessing. I gave myself time to quietly put to rest my hopes and ideas of  what we thought life would be like with our second child. This included tucking away my birthing center birth and embracing the idea that interventions were what was going to allow us to have Bella in our life.
By the time the day arrived for Bella to be born, I had mourned my normal, healthy birth and had moved to acceptance. We had dozens of doctors and students watching and standing by.  It was not personal, intimate or beautiful. There was tension in the room that was broken by small quips of humor from our side and that of the  hospital staff. It was intense, surreal and public.  However, the end result was a beautiful, life changing little girl that would be in our life for such a short time yet have an enormous impact.  THAT we were willing to embrace.

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Carnival of Natural Parenting -- Hobo Mama and Code Name: MamaVisit Code Name: Mama and Hobo Mama to find out how you can participate in the next Carnival of Natural Parenting!
Please take time to read the submissions by the other carnival participants:
(This list will be live and updated by afternoon June 12 with all the carnival links.)

  • I was Foolish Then — ANonyMous at Radical Ramblings describes how foolish lack of preparation for childbirth led to a feeling of powerlessness and fear, but that in the end she had her baby in her arms, and that’s one thing she can celebrate.
  • Sometimes no plan is the best plan — Tat at Mum in search contemplates that maybe she doesn’t need a birth plan for her upcoming birth.
  • Disturbing the peace — Kenna at Million Tiny Things thought she would be a calm, quiet baby-haver. Ha!
  • Accepting the Unexpected During Birth — Emily at S.A.H.M i AM imagined herself laboring on a birthing ball but she never imagined where she’d really be most comfortable when the time came…
  • Sacred This Time, Too — Kimber at The Single Crunch learned enough to know that the way she birthed wasn’t they way she wanted to; but she also knew to enjoy it for what it was.
  • The Birth Partner: A Great Natural Labor Companion — Justine at The Lone Home Ranger thinks that the secret to her pleasant natural labors was having a great support system.
  • the Best Thing About My Labor ExperienceCrunchy Con Mommy realizes that amidst all the things that seemed to go wrong with her labor, the love and support of her husband was the one thing she could always count on!
  • Your Birth Was My FavoriteDulce de leche describes some of the highlights from each of her four births and explains why despite the differences, they are all her favorites.
  • Birth Story: Part One – Moon on a Stick! Gentle Mama Moon tells the first part of her birth story to share some of the delight of labouring at home.
  • Embracing My Birth Experience by Sharing My Birth Story — Dionna at Code Name: Mama made peace with her first birth by sharing the story with her son.
  • Focusing on the Beauty of Birth — Julia at A Little Bit of All of It shares the beautiful aspects of her birth center water birth.
  • A Joyful Induced Delivery — Amy Willa: Me, M
    othering, and Making it All Work
    notes the meditations and perspective that helped her achieve an unmedicated birth despite being induced for medical reasons.
  • Finding Joy in an Imperfect Childbirth Experience — Deb Chitwood at Living Montessori Now tells what she learned from her two very different childbirth experiences.
  • What’s to like about a c-section? — Jessica at Crunchy-Chewy Mama is glad she her second child at home, but she also cherishes much about the c-section she had four years earlier.
  • What Story Will I Tell? — Rachael at The Variegated Life realizes that the way she tells the story of her second child’s birth matters — and could be exhilarating.
  • I Quietly Put My Hopes to Rest E — Erica at ChildOrganics shares her emotional ups and downs with the highly intervened birth of her special needs daughter, Bella.
  • Tale of Six Births — Jessica at Instead of Institutions appreciates that unique challenges and joys of each of her births.
  • Labouring naturally: nature’s gift — Caroline at stoneageparent describes the most beautiful, spiritual aspect of the labour of her son, the first stages along a bumpy road to giving birth.
  • All The Woman I Am. — Lindsay at This Woman’s Work shares a poem about letting go and surrendering during the thralls of labor.
  • A twin birth story: embracing the unexpected — Megan at The Boho Mama shares her twin birth experience and how she found the silver lining when faced with preterm labor, premature birth, and a two-week NICU stay.
  • Giving Birth With Eminem — Kerry at City Kids Homeschooling shares how fiery rap music contributed to an empowered homebirth with her third baby.
  • Two Different Births — Cassie at There’s a Pickle in My Life shares how she learned from her first birth experience and how to trust yourself and your body.
  • Embracing Our Potential: Birth as a Metaphor — Sheila from A Living Family guest posts at Natural Parents Network and expresses how birth has served as a metaphor to help her through other experiences in life.
  • Little Sister’s Birth Story: Our VBAC Adventure — Charise at I Thought I Knew Mama describes the recent birth story of her baby girl, her pride in an epidural-free VBAC, and how her story isn’t exactly the birth experience she had planned for.
  • A Journey in Birth Confidence — Shannon at The Artful Mama shares her experiences with labor during both of her sons’ births.

The birth of my sweet baby girl!

We arrived at the hospital around 7:30 Tuesday morning. I was nervous but had done my best to put my relaxation practice to work. We filled out a lot of paperwork and then were taken to our room. We waited an hour before anyone arrived. It seems there were some emergencies and our Cesarean was being moved to after 10:00. That meant more sitting and waiting, ugh!
Finally, they started to prep me for the Cesarean. I met with my nurse and the anesthesiologist. He was a very nice man and explained everything as he went along and answered all of my questions. Oddly enough, the hardest part for me was the epidural. I’m not sure what the reason for it was, but I became faint and had to ask to lay down during the middle of the procedure. I felt nauseous and anxious, I desperately wanted this just to be over with. My husband was there with me, all dressed in scrubs. After the epidural was in place and started taking effect we were wheeled into the operating room.
The atmosphere in the waiting room was very happy-go-lucky. The lights were very bright and the nurses were making jokes and teasing one another. We were asked for permission to allow students to watch the birth of our baby girl. Since she had severe hydrocephalus it was something that drew a crowd. We gave permission, and as a result, we had over a dozen people watching the birth.
As the operation started the anesthesiologist stayed right close my head and whispered to me at different points during the surgery to let me know what was going on. My hands were shaking terribly and I could only get the shaking under control for brief moments, it was a very odd feeling. My arms were pulled out to my sides and strapped down, my husband was to my right sitting on a stool holding my hand. As the Cesarean started my husband peeked up over the large blue drape they had in front of me, he would tell me what he could see. I felt nothing as they sliced open my abdomen and uterus. It was quite hard to believe it when in a few short minutes my husband told me I was cut open and they were getting ready to pull our baby girl out. It went by so quickly, I heard a weak, faint cry as they peaked my daughters head over the drape for me to see her. I was thrilled to see her small little face. I was also thrilled that I heard her cry even though it was small and faint.
At that point I was asking my husband about the condition of our daughter, I wanted whatever information I could get. A slew of nurses and doctors from Children’s Hospital were now in control of her care. She was put on a ventilator because her head was so large that it closed her breathing passages when she was laid down.
I was sewed up in a few quick minutes then wheeled back to the room to wait. Later they brought our newborn daughter in for a few quick minutes in an incubator. Her big sister got to take her first peek and say a quick hello.She was then whisked away to Children’s Hospital where she would begin her long journey in the NICU. I honestly don’t remember too much after that.
Later that evening I was taken to a different room for recovery. I remember this point, I was extremely nauseous and continued to vomit for the next several hours. I was completely miserable. I was given anti-nausea medication, but I wasn’t able to keep it down. Later I had a shot that helped. It was so painful to be wretching and vomiting when you just had your stomach muscles and uterus cut open. My husband went to check on our baby girl at Children’s Hospital. I had a close friend there with me to give me a cool washcloth on my forehead and to set with me. I was glad for the day to be over, I wanted to rest. I felt I couldn’t even keep my thoughts straight. After many long and worrisome months, our baby girl was finally here!