Hydrocephalus?

Bryce and River, our oh-so-smiling-and-engaging twins turned 9 months the other day.  Nine months living a miracle.  Their smiles, which pop up instantly when one of their peeps appears, can light a room like a lamp.  Somehow, their tiny little faces manage to achieve more smile, encompassing all of their beautiful faces than I am accustomed to seeing.  Bryce in particular ... his smile upon his eyes is as cute and disarming as his cheeks, dimples, two bottom teeth, and spreading lips.  These boys, with deep stains upon their faces and heads are truly beautiful.

On a positive note, if you were not aware and had followed our boys somewhat, the news we received upon Bryce's last Echocardiagram was stupendous.  Surprising. Staggering even.  Dr. J said that his tricuspid leak had become so slight that he could barely hear it.  A diagnosis of dystplastic tricupsid (malformed valve leaflets) before birth is supposed to produce a leak in typical conditions that requires open-heart intervention to reshape the valve.  The age of the intervention depends upon the severity of the leak after birth.  After his second heart surgery that entailed a full expansion of his aortic arch, Dr. Morales, the cardiac surgeon suggested we might be looking at intervention as soon as one year in age. Now, could it be that no intervention will be required?  Either way, some loving force seems to be healing Bryce's valves organically.  You fill in the blanks.

As is the custom nowadays, they were due for the 9 month checkup which we set upon the very day.  I wanted to accompany Mommy because the boys, playful, and lively, have shown no interest nor ability to sit upright.  Many kids at their age are crawling.  All of my others were sitting well before this point.  Granted, our twins were born early, but not radically early.  34 weeks is not a full bake, but it's well enough into the cook to jump past most potential premi complications.  The doctor took that into account but agreed that their development in this regard was delayed and he ordered OT or PT, can't recall, which we will receive at T.C. Thomson's.  This was the main reason I wanted to take off some work time and tote along because I wanted to discuss this issue with him personally.  Their measurements were okay.  Weight gain had picked up significantly from the sluggish pace he observed at six months.  Their height was on par for their weight, though River (larger of the two by two pounds) ranked in the 50th percentile on height and Bryce, well, he was well below in percentages.  But something else caught the doctor's concern.  Something we had not anticipated at all.

You see, at six months, the circumference of their head, as well as it's growth was in keeping with the rest of their anatomical development.  But something happened in the past three months.  These past three months as our fears of their developing Sturge-Weber Syndrome seemed to calm.  The growth of their heads far outran the growth of the rest of their body.  River's head in particular was in the 99th percentile for his age whilst his height was 50th.  Something was causing their heads to grow abnormally fast.  Dr. Meredith suspected it might be Hydrocephalus - a condition described in slang as "water-on-the-brain" though it is actually excessive cerebrospinal fluid.  Normally this stuff performs its very important functions around and through the brain then drains into the blood stream at the base of the brain.  Because our brains are always in production of this fluid, the absorption system is constant.  However, in one with Hydrocephalus, the fluid is not reabsorbed into the blood stream causing buildup in and around the brain.  Babies can accommodate this growth better than adults because their sculls have not closed, however, inevitably, if the condition if not treated, the outcome is calamitous.  The problem is, the most popular form of treatment: installation of a shunt, a catheter, and a valve with an external plumbing system to one-way divert the excess fluid back into the bloodstream typically around the lungs or the heart.  The problem is, this system is prone to problems and most often involves further corrective surgeries for the drainage system and, the system itself can be prone to irregularity.  The valve has to regulate the drainage manually.  Drain too much and the ventricles in the brain can collapse and lead to hemorrhage.  Drain too little and the symptoms of Hydrocephalus present in due time.  There are some advanced alternative treatments that require lasoring in the brain, and if effective, do not entail all the dangers and maintenance of the shunt system.  All our doctor was aware of is the shunt system.  

Nicole said she overheard him discussing in the hall with another doctor.  Apparently he was mystified why the boys presented no other symptoms of the disease yet their head had grown so anomalously.  He ordered an ultrasound of the brain which can occur peeping through the large open spot atop their heads where the scull has not closed.  This should give us some indication if Hydrocephalus is the culprit.  If the test unlayers concern, we will have to move their Cincy MRI forward and head north somewhat soon.  I don't know how this plays into, against, or with the ongoing concern about Sturge-Weber, or if this is some forshadow of that condition.  My gut tells me the two are not connected so a diagnosis of Hydrocephalus if it occurs is not indicative of inevitability of SWS.

I write this at a time when many of us in the CPC family have heavy hearts.  Just tomorrow we will celebrate the beautiful life of a remarkable lady who passed on to her Father just this past week.  Patty was a light to even in her suffering.  I still feel the loss of Freda for Tom and his girls (and the grandkids), and another on our prayer list, Lula, the 10 year old daughter of Lynn's dear friend in Boise also passed onto her real Dad recently.  Meanwhile, Lynn, Gideon and Andy are back in Cincy, where they may still be if we have to pay the north a visit, hoping for some real clarity after a painful biopsy of Gid's lung tissue.  We celebrate as a family with Cynthia and their Ashlyn as her recent chest scan revealed no cancer.  We weep and celebrate and so many times, we do so at the same time, sometimes for the same reason.  We celebrate that Patty is free of pain, though we mourn with her dear family the loss of their beloved.  Such is our approach to tomorrow.  So many gains.  So many miracles, so many celebrations for boys, yet, it seems, so many ongoing causes of concern.  Thank you for your sustaining love and interest in their precious lives.

Frank, Nicole, Elise, Thomas, Ani, Sophie, Kai, Eden, River, Bryce.