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?


Celebrating Pregnancy

I enjoy being pregnant. I get excited to watch my belly enlarge each week, I get excited to wear maternity clothes and I love to feel the little life inside of me kicking and moving around. A lot of the joy has been sucked out of this pregnancy due to the complications of Hydrocephalus and Dandy-Walker to our unborn daughter. Instead of joy and excitement we are often left feeling anxious and depressed.
I really wanted to do something that would help me have some joy and celebrate this pregnancy. We decided to have some pregnancy photos taken. It was a great experience for our entire family. My husband was hesitant at first, but after some thought he agreed. He has a photographer friend at his work that was willing to come to our house to take the photos. We spent the evening posing individually and together as a family with my bare belly. The pictures turned out wonderfully and have brought me a lot of joy just to look at them. I’m so glad we did it!
I hope others take the time to do something to celebrate their pregnancy. Having maternity photos are only one way of doing this. You can use paper mache and make a mold of your belly to remember your pregnancy, you can do this yourself or buy a kit to make it easier. Other moms have had henna tattoos or some sort of artwork painted on the canvas of their tummies. Whether you are having a low or high-risk pregnancy I encourage every mom to be to take the time to really enjoy and celebrate their pregnancy.
At our appointment this week, I had to abandon all possibilities of a vaginal birth. Our daughter’s head circumference is now 370.80mms, or the equivalent of approximately 44 weeks. Her abdominal cavity measures around 246.80mms or about 29 weeks. The right lateral ventricle is measuring about 67mms and the left ventricle measures at 23mms. This was a tough appointment, I went by myself. My husband has always been with me up to this point. They needed three technicians to come in to do the measurements. I was more than happy to leave when this appointment was over! They have scheduled a lung maturity amniocentesis for this next week.

What’s a big sister to do?

Throughout the pregnancy, we have been very open with our oldest daughter that is three and a half years old. While we were planning our birth at the Birthing Center she went with us to all of our appointments. She has watched numerous birthing videos with me, real birthing videos, not ones that have been edited for TV. She knew about normal birth, and how the baby grows inside her mommy. She had been planning on cutting the cord of her younger sister and was telling everyone about it. Now plans had changed a bit due to the diagnoses of Hydrocephalus and Dandy-Walker of our unborn baby girl.
We now keep her involved in the pregnancy, but she doesn’t go with us to our appointments at the Perinatal Center. She was with us for the original ultrasound where we learned of the Hydrocephalus. The appointments are quite stressful, so we make the day fun for her by taking her to spend the day with my parents. This gives my husband and I the time to go to the appointments together, and then regroup deal with the latest news before going back to pick her up. It works well for all of us.
We still keep our daughter informed on the pregnancy, but on her level. She knows she is going to be a big sister, but now we’re not going to have a water birth. She also knows the baby is a bit sick and will need to be in the hospital. We try not to focus so much on the negative, but also want her to be aware of the changes that we’re all going to experience in the upcoming months.
At this weeks appointment we were hoping to still have stable measurements, but we had no such luck. So that was quite disappointing. We’re about 31 weeks pregnant and her head circumference is 311mm, or about 35 weeks. Her body is only measuring at about 26 weeks. At this point I’m still hoping for a vaginal delivery, though it is looking less and less likely.