Prematurity and what YOU can do about it: WalkAmerica

I am blessed. I do not have children of my own, but I am blessed all the same, for my sister's children are still alive.

After weeks of labor pains and hospital stays, my sister gave birth to Kaia. She was only 29 weeks pregnant and was terrified out of her mind. Her first baby was coming far too early and she could see the worry on the face of every doctor and nurse that walked into her room. Thankfully, however, even though he was born early, he never had a problem. He spent 3 weeks in the NICU and was then able to come home with her. He's never had to return to the hospital. He's now a happy 2 year old and aside from being a tad short and not too talkative, he's healthy and completely normal.

My sister got pregnant again, completely by accident, when Kaia was just a few months old. Everything seemed to be progressing normally, but she was huge. When she was 5 months pregnant, she began to have little episodes of minor bleeding. She'd go to the labor and delivery unit, they'd check her out and all would be well. Finally at 27 weeks, she awoke one morning and her water broke. She was 60 miles from the nearest hospital with equipment to care for a preterm infant. She was transported via helicopter to Little Rock where the doctors tried frantically to keep the baby from coming until they could get some steroids into her for his lungs. 

It didn't work. 10 hours later, her second child arrived.

Aloshua was born in May of 2005 at 27 weeks gestation. He tried to cry once and then quit breathing. The NICU team was waiting and went to work on him as soon as he was delivered. It was heartbreaking to watch, especially knowing that there was absolutely nothing in the world any of us could do for him. They rushed him to NICU, still working on him and placed him immediately on a ventilator.

We didn't know until after he was born that he had Arnold Chiari Malformation Type II (complete with spina bifida and hydrocephalus) and a slew of other medical problems. He spent 3 and half months in the neonatal intensive care unit. A month and a half of that time was spent on a ventilator. During his NICU stay he underwent 2 surgeries (one to close his spine and another to put in a LP shunt). We didn't think he would ever get out of there and it was truly a nightmare. We drove 60 miles each way every single day to sit by his tiny little bed and stare at him. We were not able to hold him until after he was taken off of the ventilator... 5 long weeks.  

NICU is truly one step forward and two steps back. He'd have one good day, and the  two would be touch and go.

He was home for 3 months before he went back into the hospital in November of 2005. We learned that he had malrotation with Ladd bands (his colon, appendix and intestines were on the opposite side of his body). During that particular hospital stay, he underwent 5 different surgical procedures and came home with a G-Tube (feeding tube). Since that stay, he's been in and out of the hospital and has underwent numerous shunt revisions and even spent a month in the neurosurgery unit when his shunt became infected with MRSA.

However, the biggest concern was his breathing. He worked so hard to breathe, even when on continuous oxygen, that he was loosing weight instead of gaining So, in May they put in a trach hoping it would make things easier for him. Within a week, it was evident that it just wasn't going to work that way. So, he was placed on the ventilator. Since May, he's gained several pounds and is a completely different baby. He can now hold his head up, laugh and smile. He rolls over, he plays. After 4 and a half months in the hospital this time around, my 16 month old nephew will be coming home. But he won't be alone. He will have around the clock nursing care, speech, physical and occupational therapists 3 to 5 days a week, and an entire wardrobe of medical equipment. But we are counting our blessings.

Not every family is so lucky. Every year 500,000 babies are born before 37 weeks gestation. Many of these babies will not survive (115 babies, out of every 100,000 live births, will die). While we were planning Aloshua's latest trip home, many families were planning a funeral for a baby that never lived to see home. (Stats from March of Dimes) 

This fall, the March of Dimes will host WalkAmerica across the nation. Proceeds from WalkAmerica go to medical research, parent education and health care for infants and children. In 2004 alone, the March of Dimes have given over $24 million dollars in research grants to scientists working to save babies. Without the support of the March of Dimes, many of the preemies that are alive and thriving today might not have made it through their first night... my own nephews included.

The walks aren't long or rigorous, but are vital to saving lives. 

So, having said all of that, I am writing this particular post to encourage you to participate in a WalkAmerica event in your area. Start a school team and sign up your friends, put cans out at local businesses and donate your change.

http://www.walkamerica.org/OFT_Landing.asp?si=&w=

I've been there twice with cherished little ones and I've seen first hand exactly what comes out of that research... one of those things loves Thomas the Train and goes everywhere I go and the other is finally coming home again on October 17th.