A Letter from the Nardulli Family

Dear Family, Friends, and Supporters of Lauren:

We were never prepared for Lauren’s issues because we were told the pregnancy was picture perfect, with no tests showing any sort of problem. After the birth, we were told that a neural tube defect can form day 28 of pregnancy.  What would this mean?

A phrase we hear constantly by various specialists is “Lauren is a complicated baby with many issues”.  Usually, it is in response to one of our questions of why she is not gaining weight or  eating by mouth.  We try to be strong for Lauren, but it has been hard.  We estimate that Lauren has been in the hospital for at least a third of her life with almost 80% of her life in some sort of doctor visit or therapy.  This has a definite effect on our family.  It’s very stressful to know that your daughter will have these challenges, but it is a whole other level to watch your child cry in pain and throw up from her issues and be unable to offer Lauren any relief.  It is tough to watch her struggle to gain weight and process her food and then be told that we aren’t doing enough, but “Lauren is a complicated baby with many issues!”

Many people have said we seem to be coping so well.  I point out that everyone would do what needs to be done; that we aren’t really any different than any other person faced with a challenge.  But, it hasn’t been easy.  Both Amy and I have seen a negative impact on our health.  We have both gained weight, we don’t sleep very well, and we have periods of doubt and fear that bring on depression.  I find myself losing my temper and taking it out on my family, which doesn’t make their lives any easier.

The biggest impact is on Amy, Katelyn, and, of course, Lauren.  Every week Lauren has physical, speech, occupational, and developmental therapies.  She also sees a nutritionist twice a month.  Then there are the routine doctor visits, which for Lauren means: neurosurgeon, neurologist, gastroenterologist, urologist, otolaryngologist, orthopedic, pediatric eye and dental and our pediatrician.  She also sees a geneticist, who seems determined to prove that she has a known syndrome.  This does not include the hours spent for MRIs, CAT Scans, X-Rays, leg brace fittings nor the numerous surgery situations.  We are also visited by two nurses and at least one social worker to make sure we are coping.  All of this is complicated by the fact that my job requires significant travel which means, many times, Amy is managing all of this herself.  We do get great help from family and friends, but we feel very guilty asking because of the impact on their lives! Amy also is required to spend time making sure insurance claims are coded right; otherwise, we could be faced with hefty medical bills.  This is a stressful project unto itself.

We estimate that Lauren has had over 25 surgeries on her brain, spine, and stomach.  It seems like we are in a routine, but it is very stressful to see your baby hooked up to machines with scars all over her body from the numerous incisions. Our biggest fear is infection, so every time she’s sick, we are stressed out wondering if it will spread to her shunt.  Lauren is the size of a six month old by weight and a nine month old by length.  She is on over 5 medications and is fed through a feeding tube into her stomach (G-Tube).  There are so many times when we see Lauren so beat up that it concerns us if she can, or should, keep fighting.  In spite of all of this, Lauren is crawling and is working towards standing.  She is required to use leg splints and a body brace for right now.  She has a great sense of humor and a tenacity that would put all adults to shame.  She is intelligent and has very good fine motor skills.  Lauren’s tolerance is incredible.  She really inspires my wife and me.

The person I am most proud of is Katelyn, our 5 year old daughter who has shown unending patience and understanding over the past two years.  She is very much aware of Lauren’s challenges and is very protective of Lauren.  They are now starting to play together and Katelyn gladly gives up a toy or helps her sister sit-up to play.  She will help clean up when she throws up and will soothe her sister when she is in pain.  Katelyn has been shipped between various family members or has family members stay at our house for those numerous doctor appointments and hospital stays.  We are trying very hard to provide a “normal” environment for Katelyn, which means pre-school four days per week, soccer, gymnastics and play dates with various friends.  This puts even more pressure on Amy.  We have seen flashes in Katelyn where she does feel like second fiddle.  Katelyn is a smart, physically-oriented child who deserves better, and should demand it, but doesn’t, thankfully. 

Our house is a mess, various projects have been put on hold, but we feel it is well worth it to provide Lauren every opportunity to improve.  Our concern is that as Lauren gets older, she will always be referred to as that child with complex problems, that teenager with complex problems, and that adult with complex problems.  We have been blessed with Lauren, for the person she is today.  We can’t begin to thank all of you for your support and prayers.  It means so much to our family.

Thanks,

Mike, Amy, Katelyn, and Lauren