THE LWF BOARD MEMBERS
The Lane Walker Foundation was founded in 2011 by two sisters with a Mission and a Passion for helping others and this is the story:
Lane was born 11-24-07. This was a Saturday, 8:35 a.m., in Midland, Michigan. Shortly after his arrival he turned blue while being held by family and friends. He was rushed to the nursery where a nurse immediately got him under an oxygen hood which allowed him to obtain a healthy oxygen level. In the meantime, chest x-rays where being done to try and determine the cause of the poor lung function.
Approximately 12 hours later, at 8 p.m., the only conclusion was that he had fluid (mar conium) on his lungs, due to the delivery process. As his condition slowly grew worse, a consult from a pediatrician was suggested by the nurses on duty. Also, the mention of a transfer to Convenent Hospital in Saginaw was mentioned, as they are more equipped to handle pediatric ICU situations. After realizing that a transfer was inevitable, and that Covenent was full, we ended up in Lansing, at Sparrow Hospital, but not before learning that the transport team from Lansing that came to get Lane had discovered a heart murmur. By 11 p.m. the 24th of November, Lane was being prepared for transport. For his safety, Lane was put on a CPAP (continuous positive airway pressure) machine to aid his breathing. At this time we were under the impression that our son had pneumonia and that a few days on an IV antibiotic would be sufficient and we would probably be home on Monday.
1 a.m. Sunday, the 25th of November, we found ourselves in Lansing meeting several new doctors, the first of which was a cardiologist, remember the transport team that heard a heart murmur, well it was because Lane had a whole in his heart. VSD (ventricular septal defect) this was secondary to finding that cause for the fluid on his lungs. There was a team of doctors that continued to look in the breathing problem, because they did not believe this was caused by the delivery. By now due the extensive testing that they had to do on Lane the CPAP machine would no longer be sufficient. Lane was intubated and put on a respirator so that his heart didn’t have to work so hard and with the lungs already full of fluid, he just couldn’t keep up. 8am Sunday we were checking into the Ronald McDonald House in Lansing, because we were told that Lane was going nowhere for awhile. After just getting settled in with our bags, the doctors summoned us for a consult.
Finally, they had found the cause of the fluid on his lungs. He had a condition called TEF (tracheo-espogeal fistula) his trachea (airway to the lungs) and his esophagus (tube that carries food and water from your mouth to the stomach) had a bridge that connected them and allowed anything he swallowed to pass into his lungs. While relieve to have an answer we were devastated to find that this could only be repaired by surgery. Due to the rare form of TEF that Lane had, Lansing did not have surgeons that could perform this type of surgery. So we were then transferred to Ann Arbor, University of Michigan Hospital Mott Childrens Unit, where we could prepare to receive the surgery that Lane needed could be performed.
3pm on the afternoon of November 25th, Lane was taking a helicopter ride to Ann Arbor MI. Since the copter ride was only 20 min compared to our 2hr drive, we requested that the surgeons wait until we got there to take him into surgery. After arriving, we met with the surgeon that would perform the procedure and discussed the risks. Lane would not survive without the surgery. This was an easy decision to make, even though we didn’t want Lane to have to go through it, we really had only one option. Shortly, after agreeing to the procedure, the surgeon requested to speak with us. After reviewing Lane’s test more thoroughly, he decided that it would be more beneficial for everyone if he took a little more time to study Lane’s case, since he had a rare form of TEF compared to what they were used to seeing. At this time Lane was resting as comfortably as possible, still on a respirator and medicated to keep him sedated. The surgery was now scheduled to take place sometime in the afternoon on Nov. 26th. While waiting was torture, we knew that the hand of God was with Lane and the fact that the surgeon wanted to take extra time to make sure he knew exactly how to fix Lane put a great amount of peace within our hearts.
5pm on the 26th, Lane was taken to surgery and reality set in, there was a possibility that this could be the last time we seen our son alive. We were told to prepare of a 6 hour surgery 7 with pre-op and recovery time. Exactly one and one-half hours later, Lane was back in his room in ICU and everything went as expected. We had been surrounded by family for almost 3days now and when the surgeon came into the waiting room to tell us how everything went, it was like being at a football game, when the words “everything went great” came out of the surgeons mouth our family erupted into cheers and sighs of relief.
While this was only one of the many challenges that Lane had before him, it was none the less, behind us. 18days later we took him home.
When Lane was 9 months old he had open heart surgery to repair the hole that he was born with. We haven’t had to look back since. We have been released from the cardiologist to bi-yearly check ups and he continues to be strong and heart healthy.
The day after Lane’s 1st birthday, he came down with some kind of an illness that caused him to run a high fever. This was the first of many times that Lane would experience a febrile seizure. We would be in and out of the hospital with any and every little cold that would cause him to have a fever, since it seemed that a seizure was inevitable. Even though Lane had never had a seizure outside of being accompanied by a fever, the doctors did a full head scan to make sure that Lane did not have a neurological disorder such as epilepsy. In the findings of the MRI, they discovered something unrelated to the seizures, but none the less, a neurological disorder that would explain some other difficulties that he was having. He was diagnosed with Dandy Walker Variant Malformation, which caused a bunch of light bulbs to go for us when we found out more info, as to what Dandy Walker actually was. There is actually a pooling of fluid near the base of the brain where balance and coordination are affected. At this time Lane is nearly 2 yrs old and still is not walking. While this diagnosis was not anything we wanted to hear we now had some answers to the many questions we had. The spectrum of Dandy Walker is so vast that there is no way that doctors can tell us to what extent this condition will affect him, but we know how it has so far.
Lane has had several smaller scaled procedures, all to improve his health and longevity, totaling 7 surgeries and countless hours of offices visits and hospital stays. Through all the madness and unfairness that life has throw at us, we have so many great people that have helped us through these times, that there is no amount of money that could repay them for all they have done. The love and kindness that we have received is what has driven us to establish the Lane Walker Foundation. We know first hand the struggles that come along with kids that have special needs and the financial burden that comes along with it. I wanted to establish a foundation that could and would be a blessing to people that know how hard this road is, not because they came to a point that they had to come looking for help, but because, help came to them. So when we (members of the foundation) hear about a family that may be facing an upcoming surgery or hospital stay, we want to be able to bless that family with a gift card for fuel, food or a hotel room to help ease the stress and expense of being out of town. We have started a web page that will be interactive, so that we can communicate with people about resources that are available and programs that could benefit their child and/or family. The Lane Walker Foundation exists to minister to the needs of families with children who have special needs. We have a group of people that are excited and committed to changing people lives through love and kindness, just as so many friends and families did for us!