The Safety Mom Chronicles

My real life experience with Cord Blood Registry

As some of you might know, the reason I became The Safety Mom is that my first child died of SIDS in 1997.  I became committed to saving children's lives and hopefully sparing other parents the grief that my husband and I had experienced.  Since then I have had the good fortune to represent companies that truly are committed to the same mission.  And this weekend I was able to witness one such company in action first hand - Cord Blood Registry.

A good friend went into labor during her baby shower this weekend.  Unfortunately she was just 26 weeks pregnant and carrying twins.   The doctor told my friend Angela that most likely the twins would be born within the next 24 hours and that they would be immediately rushed to another hospital that had better services for premies.  Once they were at the hospital I called my contact at Cord Blood Registry to find out whether they would be able to collect cord blood from babies this premature.   I was told absolutely they could and my contact worked tirelessly all Sunday to find the CBR representative who serviced this area to determine whether this hospital had kits in stock or whether we could get them from another hospital.  As I have learned, some hospitals are reluctant to collect cord blood from premies and, in fact, I was told by one of the maternity nurses that "they don't do it."  I immediately called Angela's husband and told him that he must insist that they collect the blood - this is the parent's right.  Her husband was extremely frustrated as he had never been told about banking cord blood from their doctor and, as he said, "If this is so important why am I only hearing about this now?"  I managed to explain to him some of the incredible advances that have occurred with the use of umbilical cord blood - how it can now be used in the event of brain injury, cerebral palsy and when there is neurological damage - all potential outcomes of prematurity.  But it had to be Angela that told her doctor that she wanted to collect the blood.  She was so dopey from all of the medication she forgot!

Fortunately, Monday morning she told her doctor but was informed that the hospital was out of kits.  That's when CBR really kicked in!  We found the CBR representative (who was in the process of moving from another state and didn't even know the area very well yet)  She hopped in the car, got to the hospital and was running the kits down the hall as Angela was being wheeled into the operating room!  She literally arrived with moments to spare.  Ironically, I later learned that this rep had met with Angela's OB group on Friday and was told by them that they never discuss cord blood banking with their patients but only discuss it if the patient brings it up. 

This is ridiculous!  Isn't it a doctors responsibility to explain options to their patients?  How can they withold information that could literally save a child's life?!?!  Are they not aware of the miraculous stories of children who have started walking and talking thanks to cord blood?  If you haven't seen this video, watch it and be prepared to cry!  Chloe Levine's story. 

Angela gave birth to two beautiful little boys, both weighing under 2 lbs.  The executive from CBR was one of the first people on the phone with me asking about the boys and requesting a picture.  His local rep called back to make sure the courier had arrived to pick up the kits and my contact was going to take a picture of the vat where there blood was being stored so that Angela could see it.  We were both in tears wondering what the future would hold for these two little boys.  I have never been involved with a company such as CBR - where every employee cares so deeply about their clients and are willing to do anything to help.

I know that I could never have lived with myself if I had not convinced Angela to bank her sons' blood.  This is insurance, not just for the challenges that might await them as premies, but when they are grown boys on the football or soccer field or riding a bicycle and might need the blood due to a potential brain injury.  

I am making it my personal crusade to shout it from the rooftops to every new mom and dad - YOU MUST BANK YOUR BABY'S CORD BLOOD!  I hear some people say it's too expensive but it is a small price to pay when you consider that it might someday be used to save your child's life. 

Do Kids Really Need To Drive at 16?

The Insurance Institute for Highway Safety presented recommendations yesterday to the Governor's Highway Safety Association advocating to have the driving age raised to 17 or even 18.  There's good reason for this.  Studies show that the rate of fatal and non-fatal car crashes for every mile driven by a 16-year old is 10 times higher that of a 30 year old.  Car crashes are the leading cause of death among teenagers.

Needless to say I'm sure this would not sit well with teens.  But the statistics don't lie - car crashes are the leading cause of death for teens with close to 3,500 deaths and an additional 272,000 injuries.  In New Jersey, however, where the driving age is 17, the rate of teen deaths and injuries is lower than the national average. 

While there are many responsible 16 year-olds, are they mature enough to handle dangerous situations that come up on dark or slippery roads?  Are parent's against raising the driving age so that they can be freed from some of the after-school driving responsibilities and have an extra driver to help shuttle younger siblings back and forth to various activities?

Regardless of the driving age, do you have restrictions on your teen driver?  What are your thoughts on raising the age?

Do you know your town's school bus regulations?

Five years ago when my son was in kindergarten I got a terrible scare.  Every day he had the same schedule - Monday and Wednesday he took the bus home and the other three days he took the school bus to the YMCA.  This was a standing note I had with his teacher.  More than halfway through the school year Spencer decided on his own that he didn't want to go to the Y on a particular day so he told his teacher he was supposed to go home.  Rather than calling me or adhering to the note, his teacher allowed him to get on the bus home.  Once home, the bus driver hesitated because I was not outside to meet the bus.  But, the driver thoughthe saw me inside the house and let my 5-year old off the bus!  In reality I was 45 minutes away in Manhattan and had no idea my child was standing on a country road by himself.  Fortunately he thought to go over to the neighbor's house and went into her garage until she found him.  I thank God everyday that he was not hurt but, needless to say, my fury reigned down on the school!  What I came to learn however, is that even though a parent needs to be waiting for the bus if the child is in kindergarten, this is not the case if they're in first grade.  A bus driver can leave any first grader off regardless of whether a parent or guardian happens to be there.  Now I know that kids mature over the summer but does the school system reallythink that these 6-year olds are able to handle themselves in the event that something happened and a parent's not home?  While this is written into the school manual it is not publicized widely.  Several of my friends didn't know this was the case and were horrified.  They've now made side agreements with their bus driver to never leave their child if someone is not at the bus stop. 

We think that the schools use common sense when creating rules but that's not always the case.  We can't assume anything when it comes to our children's safety.  Do you know all of your school's bus regulations?  Have you discussed with your child what to do if they happen to get on the wrong bus or are left off without you being there?

The beginning of my journey with learning disabilities

My son and daughter started school this week and I think I was more nervous than they were.  We decided to have my son repeat 4th grade.  This was not a decision we arrived at lightly.  However, after years of doctors visits, research and expert opinion, we've finally had him officially diagnosed with non-verbal learning disorder (NLD).  I knew from a very early age that Spencer had issues.  He was late to crawl and walk.  He appeared to lack the coordination his peers did.  He had difficulty articulating words.  Unfortunately, the rest of my family dismissed this and kept assuring me that kids develop at different times.  But a mother knows and I always say, go with your gut no matter what anyone else says. 

NLD is a neurological syndrome that is marked by deficits in four major areas: visual/spatial/organizational, motor, social and sensory.  This makes it difficult for children with NLD to develop friendships as they cannot read social cues and have a hard time understanding social interactions.    Transitioning to new situations is extremely stressful for these kids and executive functioning is severely impaired.  A great definition of NLD can be found at NLDline.

This is a topic that I will be blogging about frequently.   I love my son devotedly but learning to deal with his issues has been emotionally and psychologically exhausting.  I pray every night that I make the right decisions for him.  More than anything I want to be sure that he maintains a healthy self-esteem.   Not having other boys around, I often have a hard time determining what is normal boy behavior and what is not.  But when Spencer is around other boys his age, his disability is painfully obvious.  I often end up crying when I see him with a group of other boys and he can't keep up a conversation and they don't include him in games.  It's also heartbreaking when I see him off by himself and I worry if he's lonely and just keeping it in.  I'm grateful for the one friend he does have who seems to accept him the way he is and even enjoy being with him but I realize this can change, as it almost did this summer when his friend's family came close to moving away.

I'd love to hear from anyone dealing with NLD or, for that matter, any mom who has a child with special needs.  For me, talk therapy helps beyond words and just knowing that other moms struggle daily with their children's issues makes me feel a little less isolated.