About three months ago, I was perusing my
newsfeed when a story from the famous modern artist, Yaeli Vogel, showed up.
Her message was strong yet clear: Her newborn baby was inexplicably unable to
eat and sustain weight gain. Doctor after doctor had been consulted, and,
thankfully, every possible culprit was ruled out. This week, Yaeli posted an
update that made my blood run cold – not because the diagnosis was severe; on
the contrary. Her story resonated with me personally on a deep level as I went
through something very similar about three years ago. Although it was the same
mystery solved in the end, the path to get there was very different. One thing,
however, was exactly the same: the lack of physician education on, and the
failure to take seriously, a matter that took such a small fix.
Here is an excerpt
from Yaeli Vogel’s story: “My baby wasn’t eating right for the first few weeks
of life. He was bottle fed but it took so-o-o long to complete the bottle. Then
at about five weeks old he really digressed and ate only four ounces all day!
He would cry and cry whenever I tried to feed him. I thought he was allergic to
the milk, the bottle, the pacifier, me?! I was at my wits’ end, I really could
not deal. It was the only thing on my mind. How much did he eat? Why isn’t he
eating? Please make him eat! After each feeding I just wanted to die. Sorry for
the theatrics, but it’s really how I felt. I just couldn’t take the helpless
feeling I was feeling – watching my child suffer and not knowing or being able
to do anything for him. It all came to a halt the Shabbos, erev Tisha b’Av. He consumed two ounces the entire day. I was a
wreck, and so we went to the ER. I wanted him on a feeding tube. ASAP!”
After ruling out
all potential issues, Yaeli’s baby ended up being discharged on a feeding tube.
A few weeks later, a nurse discovered one position the baby would eat in
successfully. Yaeli was the only one who knew how to feed her baby, and she did
not get any respite throughout the day. The reason for all of this remained a
mystery: What could the diagnosis possibly be?
Three Years
Earlier
Our baby girl was
born right before Shavuos. It was an incredible chag spent in the hospital with our sweet daughter after three
rambunctious boys, kn”h. She was
eating well, sleeping a lot, and doing what every baby does. Suddenly, at the
age of four weeks, she started crying constantly. There was nothing we could do
to console her. She would eat and then cry. She would cry and then eat. She
would sleep and then cry. The cycle continued. She adamantly refused a
pacifier, spitting it out the moment it was placed in her mouth. If we tried
holding a bottle or pacifier to her mouth, she would merely cry around it.
Meanwhile, I became a frequent-flyer at the pediatrician’s office. The doctor
said that since she was gaining weight, she merely had colic, “which will
eventually go away on it’s own.” Having a crying baby on your lap leads you to
many sleepless nights, which gives you all the time in the world to scour the
internet for clues. Articles about dairy intolerance were the most common, and
being that feeding our baby via bottle was an impossible task, I took upon
myself a completely dairy-free diet, despite being a fleish-a-phobic. After consulting again with our doctor, he offered
to allow us to try a small dose of Zantac, an acid reflux medication, which did
not work either. I went back a month later, and he prescribed Prevacid, a
stronger reflux medication, which came in pill form. I was told to put the pill
on her tongue and wait for it to dissolve on its own. I’m sure you can imagine
what torture it is to watch your screaming baby with a pill on her tongue
barely dissolving like it’s supposed to, since her mouth is wide open
screaming.
Finally, I found a
specialty pharmacy willing to take the prescription and turn it into a liquid,
but I was disappointed yet again. After days on the medication, I saw no
improvement so I took her off of it. A
recent article in Ami talked about a
colicky baby who was cured by her mother abstaining from canola oil, so I tried
that, too, with no success; our baby was still screaming.
At a certain
point, I was so desperate that I picked up our screaming baby and went on a
trip to the pharmacy for naturopathic solutions such as Colic Calm, Gripe Water,
Culturelle, and probiotics. All promised and guaranteed to help soothe our
colicky baby. In the hullabaloo of trying different ones (all not working of
course), I mistakenly gave the dose of Colic Calm – a bit of a higher dose –
with Gripe Water. My baby had stopped crying and fell asleep. Surely something
was wrong! I then noticed I had given a stronger dose of Gripe Water than I was
supposed to and called Poison Control. The operator asked detailed questions,
which lead to the question of, “Ma’am,
what medication are you talking about?”
I told her it was
called Gripe Water. She stopped short and said, amused, “Ma’am, I’m not telling
you to do this, but you could theoretically give your kid a whole bottle of
that stuff without ‘overdosing.’ These naturopathic medications basically have
nothing in them. Your daughter is fine.” I realized then and there that the
reason she had suddenly stopped crying and went to sleep is because she was exhausted, and cried herself to sleep;
it had nothing to do with the Gripe Water. My attempts to try any and all of
the naturopathic meds in the future led to no results but continuous screaming.
By chance, I had
been talking to my friend’s mother, who heard our baby screaming in the
background. I happened to mention colic, and she told me that her married
daughter (my friend, whose shidduch I
had made) had a baby who also had colic. She asked if I had gotten her looked
at for a lip tie/tongue tie. In my mind I had ruled that out ages ago, since
our baby had been gaining weight steadily. My friend, who had been a real shaliach, called me a few minutes later.
She said her mother had told her about our daughter, the colic and fussiness,
and suggested I get her looked at for a lip tie/tongue tie. I had already been
told by the doctor that she did not have ties, so I poo-poo’d it. My friend
came over a few hours later with a special bottle and a can of the (very
expensive) leftover non-dairy hypoallergenic formula that her son had tried.
That night, after a five-hour non-stop crying sprint, I decided to try the
formula, but my daughter wouldn’t have it. As usual, she refused the bottle and
refused the formula even more, crying so much that she threw up.
It was a never
ending nightmare to see our daughter suffering so much for an unknown reason
and have absolutely nothing to do about it. Finally, at three months, the
doctor referred us to a pediatric GI (gastroenterologist). He said he’s almost
sure that this was just colic but that a pediatric GI might be able to shed
more light on the issue. The long-awaited appointment date came, and my husband
and I brought our screaming daughter to the office in high hopes of a solution.
After a long appointment full of questions and a full body check-up, the GI suggested
that I continue the dairy free diet I had started one month earlier and start
to omit soy as well for one month. If that did not help, she continued, I
should go on a complete elimination diet. The elimination diet includes
eliminating all traces of dairy, soy, eggs, nuts, corn, wheat, leafy greens,
red meat, vegetables coated with soy (who knew they coat vegetables with
soy?!), refined sugar, condiments, to name a few. Basically, eat nothing but
plain chicken and certain vegetables for a while. “But don’t worry,” she said,
“I see how overwhelmed you look. I can refer you to a therapist as well, to
help you cope.” I left the office feeling defeated, wishing there was something
immediately that I could do to help my baby.
Soy was omitted
from my diet for one week as well, which was hard because soy is in almost
everything. Once again, our daughter would not stop crying. It was at this
point that I lifted my daughter’s lip to see the frenulum (the tissue inside
the mouth that connects the lip to the gums) but I really did not know what I
was looking at. I decided, as a last resort, to get her checked for ties, so I
called the person my friend recommended for a consultation, Dr. Robert Marcus
in Baltimore. He is a pediatric dentist who specializes in lip tie/tongue tie
cases. I was told to avoid seeing a different physician who does not use the
special laser procedure. At our consultation, Dr. Marcus diagnosed her with a
tight lip tie (not tongue tie), and he did the procedure on the spot. With the
state-of-the-art laser Dr. Marcus used in the frenulectomy, there was no
bleeding afterwards. The aftercare was merely to apply a bit of oil to the area
every day for a week. Dr. Marcus called us every night for a week to make sure
everything was going okay; he was truly a godsend.
I am not
exaggerating when I say that the day we got home from the procedure, our
daughter stopped crying. I remember so vividly putting her down on the bed
after feeding her, and she just looked up at me and gave a huge smile. I had been
so worried she would be miserable for a long time after the procedure, but I
was wrong. She was smiling, she was quiet, she was happy.
For us, the relief
came right away, and stayed that way. I have heard, however, that for some,
physical therapy is necessary so the baby can learn to finally suck properly.
Apparently, even though our daughter had been gaining well, she had been
swallowing a lot of air which caused constant frustration and tummy aches. When
she had more range of motion she was able to eat better, with no stomach pain,
and the crying stopped for good. We wish we had gone to Dr. Marcus months prior
but feel very lucky that we eventually did. Ironically, we had a follow up
appointment two weeks later with the pediatric GI we had seen a month earlier.
One of the reasons I actually kept this appointment was to see her reaction
when she saw the difference in our daughter, so she could recommend this to her
other patients. She looked at our baby and exclaimed, “Wow, this is a different
kid! I guess the elimination diet worked!”
“No,” I replied,
“We actually got her treated for a lip tie she apparently had, and that day her
crying went away; it really was amazing.” To which the GI replied, “Oh, she had
probably just had colic that suddenly went away on its own.”
The ignorance and
attitude of it-can’t-possibly-be-that astounded me. My husband, an internal
medicine doctor at urgent care, now uses any opportunity he gets to refer
mysterious colic cases to get checked for ties. I, too, have a new mantra: If
your baby constantly cries, get her checked for ties; you won’t believe your
eyes – or ears!
