Watch Kaleb’s Law – SB 174 come into law in Oregon!  May 30, 2013

written by Lindsey Lahr
Kaleb was born August 1, 2010 at 10:30am, on his due date and was deemed a perfectly healthy, 7lb 11oz boy. He got 9 out of 10 on the Apgar and was the perfect shade of pink. But throughout the day we began noticing his breathing was fast and heavy. When I pointed this out, hospital staff dismissed our concerns and labeled me with “new mom syndrome”. At 2:30am the next morning, I found myself unable to sleep. A new nurse greeted me and I asked her, as if I hadn’t asked others the same question, if he looked like he was breathing fast. She checked him over and decided to do a pulse ox. That was the first time a pulse ox was done on him. Confused by the low reading, she went from his hand to foot and then hand again before deciding the machine was malfunctioning. She didn’t seem to be too concerned and even said that wasn’t the first time she’s had trouble with that hand held pulse ox. She offered to take him to the NICU and try a different pulse ox machine on him. To her surprise, it also gave a low reading. She quickly realized this wasn’t a mistake and called for help.

Suddenly the room was filled with frantic doctors and nurses. An x-ray showed Kaleb’s heart filled his chest and only 8% of it was working. They didn’t know if they could save him. The oxygen in his blood wasn’t reaching below his neck and they feared he would have brain or nerve damage. The hospital wasn’t equipped or staffed to help him so they requested a neonatal intensive care unit to transfer him to a bigger hospital. From there pediatric cardiologists spent hours doing tests on him and found the culprit of his failing heart. Kaleb had Critical Congenital Aortic Stenosis and Endocardial Fibroelastosis (EFE). He was born with only one leaflet in his valve instead of three and it had nearly sealed his valve shut. Because of this, his heart began failing the moment he was born. He was sent by Mercy Flight to Legacy Emanuel, a hospital four hours away and given an emergency angioplasty. It was successful and after a week in their NICU, he was released to go home.

Less than three months later he was back in full heart failure and admitted to OHSU for his second angioplasty. This time, it was a failure. The surgeon went up a balloon size too big and blew a hole in his heart. Heartbroken, the head of cardiology told us Kaleb wouldn’t live to be a year old. To our relief and everyone’s surprise, Kaleb defied all odds as he grew and thrived!

At two years old he had a deep cough that lasted for months. An echo showed his PDA was still open and his lungs were filled with fluid. Kaleb returned to Legacy Emanuel and had two clamps placed in his heart through catheters to close the hole. Six months later, Kaleb’s EKG’s and echoes looked great. His heart was functioning well and his aortic valve replacement was pushed out another four to five years. Sadly, our peace didn’t last long. Months later Kaleb had a routine echo that showed the left side of his heart, his coronary arteries and pulmonary valve were enlarged and his pulmonary valve and aortic valve had severe leaking. He is currently awaiting his fourth surgery for a ROSS Kono on February 6th.

Kaleb’s Law

The damage done from Kaleb’s CHD going undetected for so long is irreversible and nearly cost him his life. That’s why in July 2012, I contacted the American Heart Association and the March of Dimes and asked them to help me pass Pulse Ox Oregon, Kaleb’s Law, so no other family in Oregon would have to go through what we went through. I immediately made up awareness flyers and distributed them to WIC offices, Planned Parenthood, hospitals, birthing centers and even to several baby boutiques. The first time the AHA and March of Dimes and I met and the very first legislator we met with offered to carry our bill. I remember thinking “this is too easy’. Shortly after we found out he wasn’t running again and couldn’t carry it all the way. So that December we tried again. Every legislator we met with was supportive and each one asked if they could file it personally. By the end of the week the bill had been filed three times! In January I asked Governor Ted Kulongoski to proclaim February 7th-14th, CHD Awareness Week and to celebrate it, we held a lobby day at our State Capital. That day my husband and I met with many legislators and passed out flyers with Kaleb’s story on it, encouraging them to support our cause.

We also wrote our new City Mayor and asking him to make February 7th-14th, CHD Awareness week. As his first order of business as Mayor, he declared our proclamation. We rallied our schools and our town to help us bring awareness. Schools made hearts and wrote to our legislators asking them to support our bill and businesses displayed the hearts they made in their windows. A sign company donated banners and a florist donated flower arrangements. The local paper and news stations ran stories about our campaign (they both have been following Kaleb’s story for years but now they support my advocacy). We even asked businesses to offer heart healthy meals as their special and our hospital (the same one Kaleb was born at) even donated their CPR trainers to teach CPR to kids at schools that week. Downtown once a month, our city has an “Art Walk” where our galleries stay open late and offer live music and hors d’oeuvres. Their regular artists made paintings of hearts to display that week. A store called The Kitchen Co. had their chef demonstration how to cook heart healthy meals. It was such a successful week!

Finally on May 30, 2013, SB 178 Pulse Ox Oregon, Kaleb’s Law, was unanimously passed! We requested this be considered an emergency and it was signed and made in to active law shortly after.

To the parents want to get started but don’t know how to in their own state, I would say to you: do not be afraid to let your voice be heard. Start with your hospitals and see what their policy is. Contact local non-profits or heart organization and ask for their support. Then call the AHA and March of Dimes for help. The more awareness you can get the better chance you have of getting a bill and getting it passed.

You will face bumps in the road but don’t give up! I had a maternity ward manager put me down for even inquiring about their policy. They were strongly against the pulse ox and only used it in their emergency room. I didn’t focus on them, however, I focused on the hospitals that were interested in hearing more. The hospital Kaleb was born in met with me and asked me to help them not only change procedure, but to change the booklet they hand out to every new mom, adding warning signs of CHDs in newborns.

Keep up the faith and don’t lose hope! No matter what you’re making a difference! Before our bill came to hearing to be voted upon, someone unknown filed a bill using our exact wording, but was asking that at some point, while a newborn is in the hospital, someone tells the parent(s) about the possible benefits of a pulse ox test. They went around to every supportive legislator of our bill and tried to get ours stopped. Fortunately, they were unsuccessful.

Don’t give up the fight! It’s worth it.