I’ll admit the title is misleading, but I promise you it’s for good reason! For the past several months I’ve had an ad on the blog about the Georgia Chapter of the Pediatric Hydrocephalus Foundation, Inc., and the cause is dear to me and my family’s heart. In 2008 my cousin Sawanda Middleton-Spinks’ soon-to-be born son, Ezekiel, was diagnosed with hydrocephalus. As you can imagine the discovery of this condition was an emotional journey for Sawanda, which she describes in a series of notes on her Facebook page. I’d like to share one of her notes with you to bring awareness to this condition and acknowledge that September is Hydrocephalus Awareness month. Furthermore, I’d like to invite those who are in the Atlanta, GA area to join me, my family, and friends for the GA Chapter Pediatric Hydrocephalus Foundation WALK and Family Fun Day this Saturday September 17, 2011 11:00AM – 4:00PM.
If you are not in the GA area, you can lend support by visiting http://www.active.com/donate/phfwalkga2011 to donate to the cause; every $1 helps! Your support would mean the world to me, Sawanda, and my family; but most importantly you’d be helping Ezekiel (Zeke) and other children who suffer from hydrocephalus. Please take a moment to read Sawanda’s note about her journey with Zeke and hydrocephalus. Thanks in advance for you support!!
*Ezekiel* (aka Zeke)
Ezekiel Malcolm Spinks has been a determined little boy since day ONE!
My husband and I were not trying to get pregnant, but in 2005, I found out we were. We were excited about our newfound joy and started to prepare for our new addition. One week later, I started feeling pains in my stomach. It was definitely bigger than a plain stomach ache. My husband drove me to the nearest hospital. The pains started getting worse.
In the emergency room, the doctor checked me and told us that our baby is “stuck” in the fallopian tube and did not make it into my womb. He said I am going through an ectopic pregnancy and I will need surgery to remove one of my fallopian tubes…and my baby. We were devastated. One week we’re planning for a child, and the next minute, we’re planning for a surgery to terminate our baby. Everything was going so fast and we just didn’t understand what was going on. The doctor told me that if I do not have this surgery I could die.
Two years later, we were pregnant again – only to be let down one more time. The fallopian tube I had left failed me again. This time I was able to save this tube, for possibly another chance at a pregnancy. After this ectopic pregnancy, my husband and I were very emotionally drained about this whole situation, so we decided to give up this pregnancy thing and think about adoption. Well, Zeke had other plans for that! We were pregnant again and this time the baby was here to stay! Zeke was determined to get through NO MATTER WHAT! Hence one of the reasons why we named him Ezekiel – strength of God.
My pregnancy was going really well. My morning sickness was really light and my pregnancy was pretty much uneventful. It was just amazing to feel him kick around my belly. I couldn’t believe this was really happening. We went through the halfmark of our pregnancy and it was time to see the sex of the baby, as well as do the genetic testing and other screenings. For some reason, that day did not go as well as it was supposed to. When you go through that particular ultrasound, you have to drink lots and lots of water for the technician to have a clear view of what she is seeing. Well, I drank almost a gallon of water, expecting for my technician to see me within the hour OR LESS. Something was going on with the technician that day, and she didn’t see me until TWO HOURS after I drank all that damn water! Well, needless to say I could not wait. I used to bathroom at least TWICE before she saw me. I was so angry. She told me that without enough water in my system, she would not be able to have a clear reading, BUT, she was going to try it anyway. She asked me to drink some more water and see what happens. I did. We found out we were having a boy! I was just excited this boy was healthy. She couldn’t see anything going “wrong” so hubby and I were just excited to know we were having a healthy baby boy!
In my third trimester, everything was still going well. Ezekiel was moving rapidly in my belly, especially when his father would rub my feet and stomach at the same time. While I would sleep, they would bond. I guess that’s why they’re so close now.
One day my brother was leaving to go out of town. He asked my husband if he could walk his dog while he was away. My husband left for work and forgot to walk my brothers dog. So, before I left for work, I made the decision I would walk him. At 8 months pregnant, my husband suggested it was NOT a good idea to walk the dog. But, I did it anyway. I went outside only to see it was raining. Well, since the dog had to use the bathroom, I figured he wouldn’t mind a couple of raindrops on him. That dog HATED the rain. He hated it so much that he JERKED me back into the house! Yeah, yanked, jerked, whatever you call it, I was pulled by an 80 something pound dog!
At first I was feeling fine. But then, I started getting stomach pains in the middle of the night. All I could do was think about the pull from my brother’s dog. Oh no, what did I do? With two ectopic pregnancies, I was feeling a bit scared and nervous that I did something to my child.
My husband took me to the ER. We stayed for four hours and my doctor thought this pain was a pulled muscle. Whew! Nothing wrong with the baby. While we were there, my Dr. was talking about the labor and procedure. We had several weeks left, so it was time to start getting ready for the labor pains, the pushing and pulling.
The next day, I got a call from my doctor. She told me that the radiologist found something in the x-rays they took last night. She said it’s nothing to worry about, but she did see some excess water around his brain. She assured me that everything is alright but I needed to see a perinatologist. She gave me one of “her” favorites and told me I can go the next day. So, off my hubby and I went.
After more poking, prodding and checking from the perinatologist, he finally told us what this excess water was. Our child has hydrocephalus. *pause*….then *silence*…what? What the hell is that, I asked. I honestly do not remember the whole thing because as he was talking, I was crying hysterically. All I heard was, retardation, low quality of life, might not be able to walk, talk – it’s a wait and see game. My husband head sunk low. I can’t stop crying. “Why is this happening to me? What did I do for my child to deserve this?” All I kept crying was why, why, why! You know what kind of cry this was – as Oprah says, the UGLY cry. I couldn’t help it. After all we’ve been through, this was just not happening to us! The doctor could not tell us why Zeke has hydrocephalus, nor could he tells us that he would be cured. “He can’t be cured”, he said, “because there is no cure.” I sat there on the table depressed and out of breath. It really felt like he just knocked the wind out of me. The doctor left us to grieve. And it was a grief, because we expected an eventful and healthy pregnancy that would produce a healthy, “normal” child. I mean, we passed through the challenging trimester, which was the first one. And after we found out that this little boy pushed and prodded and FORCED his way out of a rough and bumpy fallopian tube (lol), we just knew that all the other two trimesters would be a breeze. Oh how WRONG I was….
….to be continued…
There are 2 more parts to Sawanda and Zeke’s journey. Please let me know if you are interested in reading more…it’s a beautiful story 🙂