July 26th 2005

Today is 7/26/07. A date that is forever etched in my memory. This day changed my life forever and ever and ever and ever. I would take it back a million times over if I could.

I had an amnio 2 years ago today and found out the sex of my surviving twins. (I had miscarried my triplet just a few weeks prior).

2 years ago today I found out I was going to have 2 twin daughters. Girls! I was on cloud 9.

We were so excited!! After years of infertility, horrible injections, doctor visits, surgeries.. Finally I was going to be a mother. I knew I would be a mother. I always knew. Even with all the problems I had, I just KNEW.

In the evening I realized I started leaking amniotic fluid. The doctor said that was possible.

2 years ago tonight, I went to bed thinking that I was leaking amniotic fluid, but trying to think positive and dreaming of my dream of finally being a mother to two girls.

By the morning, I had a lot of liquid leaking...I think my water may have broken- I was in shock, something was terribly wrong.

I could never have imagined how my life would be altered FOREVER by this date.

I attribute this day to loosing my daughter Corinne.

A choice I made because I was 39 and it was what I was supposed to do changed my life forever.

I spent 10 weeks (3 months) laying in bed and leaking amniotic fluid not knowing if I would ever have children to hold in my arms.

I couldn't work to help pay the mortgage on my newly purchased first home.

My husband had to take care of me 24 hours a day and with his 24 hour normal schedule it threw our life in a tizzy.

I was told over and over to abort my pregnancy because I would never carry this pregnancy.
I moved in to my first house 2 days later and never left my bedroom for 12 weeks.

I flew to Florida (on bedrest - wheelchairs etc) and battled my insurance company (and lost) to try an amnio-patch which didn't work to try to save both my daughters. My husband and I were grief-stricken and stuck in literal "hell" in a horrible motel room in Florida when we discovered the procedure probably didn't work. We both cried and cried.

I flew back home to my bedroom existence.

Life sucked.

My daughters both grew inside me looking healthy, growing and fighting for their lives. Both of them! No one could understand that. They would say, but one is ok, right? One doesn't have ANY fluid, but the other is ok, right? My answer: "They are both in my uterus and without amniotic fluid in one, I risked the chance of horrible infection and pre-term labor for BOTH of my daughters. It was a 2 for one deal. And I wanted both of my daughters. I had already lost my triplet, I couldn't possibly loose an more.

Every week the doctors would say to me, "Wow, you still haven't gotten an infection. you know it's inevitable, you'll never make it. " I told myself I was going to make it to at least 3o weeks.
I started researching NICU's and the outcomes for preemies. It wasn't good.

Every week on Wednesday my mother sent me a huge bouquet of flowers, congratulating me on making it one more week to viability. I was convinced I was going to beat the odds. I believed in positive thinking and I was going to show all the doctors, I was going to give birth to 2 healthy daughters.

I went into labor. I was 23 weeks pregnant. I didn't know it was labor starting. I went to the hospital for monitoring, I was given drugs to stop the labor and sent back home. My babies were not viable I was told.

At just into my 25th week of pregnancy, I again started having labor contractions. My brother Gary was visiting and helping us out. He rushed me to the Hosptial. I was admitted on the spot.

I met a NICU Doctor and we had frank discussion about odds of pre-term deliveries. It was fairly grim.

I was given steroids to help my babies lungs develop. Every doctor in the world came by after hearing my story that my water broke at just under 17 weeks pregnant and I hadn't yet delivered. I was given all kinds of other horrible drugs to try to stop my labor. Mag, Terb, I can't remember them all. The hospital was having a labor strike. at 5 every morning they were chanting and yelling out my window. I wanted to yell, "who cares about your plight...I'm trying to hang on to my babies here....."

My mother Corinne flew up. a week went by. I sent my mother home. I told my husband to go back to work. I was holding these babies in me until I was 30 weeks.

Then on the night of October 3rd the contractions started again. I was a bit over 26 weeks pregnant. This time the contractions were strong. Really strong. I was given a lot of drugs again. My husband was working at the fire department. The labor nurse and I called him 'repeatedly. She said she was going to make sure I didn't deliver. Hours later at 4 am my temperature started spiking. The dreaded sign of "the infection" was there. The doctors had no choice. It was time.

I remember thinking over and over and telling Elizabeth, my labor nurse, that it wasn't time, it was too soon, I wasn't ready, the girls weren't ready. My Doctor was called. She was off, but said she'd come anyways. My delivery was delayed long enough (an extra hour) for my husband to get off work and come to the hospital (no easy feat when you are a fire man, and he had to wake up the Fire Captain and tell him he was leaving immediately).

My husband arrived. I was terrified. We were terrified.

I threw up on the way to the Surgery room. I remember chanting over and over "No, this can't be happening, I was going to make it to 30 weeks." I was introduced to 2 NICU doctors (one I had already met).

Here's a picture of how terrified I was:

Delivery Room


My nurse Elizabeth held my hand as I clenched onto hers. My husband was right there next to me. They cut into me and my first born daughter arrived into the world.

I had always knows that I would have a daughter named after my mother. My mother never knew this - it was the most special gift that I could ever have given her. We hadn't know which daughter to name after our mothers - Brian felt strongly that our first born, whose water had broken needed all the strength she could get, so she was named on the spot "Corinne Margaret" ..after our mothers. Then our 2nd born was delivered a minute later, "Kaitlyn Elizabeth"....

They were both whisked away. No cries. No nothing. My husband left my side to check on our daughters. He took pictures of them being delivered. I am forever grateful to have these pictures, as I really feel like the whole experience of delivery was a bit of a fog for me. I felt in shock. I felt ill and sick and in shock. I'll never forget this moment for the rest of my life. This isn't how it was supposed to be.

There was no joy of birth. There was no cry out of life. There was no tears of joy. There was no holding my babies to my chest. It was just silence. Unknown...It was frightful. I was empty. I felt hollow. I felt my babies were ripped out of me when I knew they weren't ready to come into this world.

3 hours later one of the NICU doctors came to tell us that Corinne just wasn't getting any oxygen. They tried and tried and were doing all they could, but her lungs just weren't mature enough to get any oxygen into her blood stream. I was in complete shock. I had 100% believed that I was going to beat the odds. That I would have my twin daughters to love forever.

That wasn't to be the case.

It was October 4th. 10 weeks after July 26th when my life changed forever. 2 years ago today. Not a great memory. Not a great anniversary.

This wasn't the life I planned.

more feeding issues....

I posted the link to this CNN clip on Feeding Disorders below in my previous post, but I thought it might be really helpful/interesting for those of you who don't understand how a child refuses to eat, (so I'm pointing it out again):

http://www.kennedykrieger.org/video/cnn_feeding.wmv

Keep in mind the child in this clip is 10....That is what my future will look like if I can't get Kaitlyn to eat soon.

..........................

My friend Lisa B is amazing!!!

Not only did Lisa help me edit the previously posted letter (I posted it before her edits, it's much better now). She spent hours on it, and then she proceeded to help even more by writing the following.... Lisa said she teared up writing this, I know I teared up reading it.....

Thank you Lisa from the bottom of my heart.

To Whom It May Concern:

I am writing independently in support of Liz McCarthy’s appeal to have her daughter Kaitlyn’s feeding therapy covered by her insurance through Blue Shield of California (Brown & Toland Medical Group).

I am a physician in San Francisco, California and I am also a mother of two sets of twins. I heard about Liz through the San Francisco Parents of Multiples Club and I was incredibly moved by her story and her twin girls, Kaitlyn and Corinne. Shortly after their birth (and the tragic death of Corinne) I discovered that I was pregnant with another set of twins (two girls). As I prayed that my own girls would be healthy, I prayed for Liz and for Kaitlyn who was born at 26 weeks gestation.

I continued to follow the story of Kaitlyn and her brave battle in the same Neonatal Intensive Care Unit (NICU) where my first set of twins spent their first month of life. Kaitlyn endured far more than my children (and most children) did but she is clearly a fighter and she survived to come home from the hospital months (and many surgeries and procedures) later. I’d never met Liz or her family but their incredible ordeal was compelling to me.

Months later I delivered my girls prematurely at 34 weeks and, quite ironically, my littlest baby M had some of the same (but much less severe) gastrointestinal problems that Kaitlyn has. M was in the NICU, and then had trouble eating and digesting food, and was eventually tube fed.

Liz heard about my struggles, emailed me and phoned me, then spent hours supporting me through the unbelievable challenge of caring for a child who cannot eat. She was unbelievably helpful and seemed to know more about pediatric feeding disorders than most of the physicians I consulted. Liz and I finally met and I understood where Kaitlyn (and Corinne) got their strength.

I would do anything to help Liz and Kaitlyn and I am hoping that this letter will further encourage the powers that be to cover the costs of Kaitlyn’s feeding therapy.

As a physician I am well aware of the indications for and complications of tube feeding. I have seen first-hand what patients endure with repeated surgeries for gastrostomy tubes, nutritional deficiencies, failure to thrive, overwhelming systemic infections, and even death. The costs associated with the care of a tube-fed patient are high and can be astronomical with any
(common) complication. The psychological toll that this takes on the patient and the family is immeasurable.

As a parent I know that having a child with special needs is exhausting, expensive, physically and emotionally draining, and heart-breaking. Kaitlyn has a chance to be a normally eating little girl with the assistance of Dr. Meeta Patel and her Clinic 4 Kidz. Kaitlyn, in my professional and personal opinion, has a severe medical condition and feeding disorder which is amenable to treatment but only with intensive therapy such as Dr. Patel’s group provides.

I have met Dr. Patel and reviewed her procedures and publications and I strongly believe that her services will enable Kaitlyn to eat. I also believe that the relatively small cost of this feeding therapy compared with the costs of long-term (and possibly life-long, if the issue is not addressed soon) tube feeding.

By the grace of God, my daughter Mis now off her feeding tube and is eating orally. She was treated by the same group of therapists and many of the same gastroenterologists who saw Kaitlyn. Fortunately, M medical issues are much less severe than Kaitlyn’s, as Morgan had 8 more weeks in utero. If M was still tube fed I would have her treated by Dr. Patel at the first opportunity (particularly since Dr. Patel has a contract with Kaiser).

I am hopeful that your department will be able to assist Liz and her family in getting this critical treatment for their daughter so that she may have the best start in life. Please feel free to contact me at the addresses or phone number above if I can assist in any way.

Thanking you in advance for your consideration, sincerely,


Lisa Ann S. B, M.D.

Lots and Lots and Lots of Pictures

Kaitlyn has learned that the word smile means "smile!" She even breaks out in a grin now when she hears my camera open! Most of the BIG smile pictures were from when Grandma Corinne visited a few weeks ago. Kaitlyn smiled more in those 3 days than she's smiled in her whole life!

What a difference!

Enjoy....

Here's the link to view all the pictures on Flikr:

Summer 2007 Pictures

This is my life.....

I decided to post one picture in the meantime.....From Lake Tahoe 4th of July Vomit Fest week. (this picture was the first day of the vacation, before she lost 1 lb from vomiting 7-10 times a day for a week).

OK, I had to post one more picture....Look at my beautiful beach babe! She's worth it all!!

If you've been wondering why it's been SOOOO long since I've posted....here is a clue. The letter below is one of MANY I've had to write to TRY to get get Kaitlyn into a specialty feeding therapy program that is PROVEN to help children....and have it be covered by my insurance....

Battling my insurance company (Blue Shield of California) has become a full-time job - ha, don't forget the fact that I do have a full-time job. Why haven't I posted in a while....well, I hope you understand (but I promise I have some amazing pictures and videos to share when I can finally get around to it!)

What is our country coming to? We have some of the best medical teams out there, but when it's not main stream and no one knows of our plight, we are left to fend for ourselves. I feel really sorry for those families who don't have the ability or the time to deal with issues like this. I don't know how many hours of my time this has taken.

I'm about ready to contact the media...Take a look at this CNN link that describes a bit of what my life is like. Why are we (families with children with feeding disorders) not understood?
or helped? http://www.kennedykrieger.org/video/cnn_feeding.wmv

I am so tired of the following questions/comments:

1. Wow, she's still NOT eating.
2. Just try putting sugar, chocolate, fruit, (you name it here) on your finger then she'll taste and want to eat
3. Oh, my child is a picky eater too
4. Oh, my child spit up a lot but grew out of it
5. You mean she doesn't eat anything by mouth, how can that be?
6. She'll grow out of it
7. Just have K watch my child eat, then she'll want to eat
8. Have you tried.....(put in your choice of foods here)


We'll here is the letter that I'll be submitting tomorrow to the Department of Managed Health Care, Independent Medical Review, (the governmental agency that oversees HMO's).

Now, don't get me wrong here, I have to honestly say that I have been extremely, extremely please with our insurance up to this point. I know that my daughter has had top notch medical care from the moment she was born (I can't say that my AMNIO was top notch)....and I'm sure her hospital bill was well over $1,000,000. Why in the world are they quivering about $15,000???? Especially when in the long term that $15K would likely save them more than that in all of the medial supplies, formula and nursing we would no longer need them to pay for??

Maybe I should start a foundation to get children into feeding much needed feeding therapy programs like this...(my daughter being the first beneficiary).

It makes no sense!!!!!

(some details have been omitted to protect privacy)

July 13, 2007

Department of Managed Health Care
HMO Help Center
IMR Application

RE: Kaitlyn McCarthy

Dear IMR Team:

I am writing to ask you for much needed help in facilitating approving Pediatric Feeding Disorder Therapy coverage for my daughter, Kaitlyn McCarthy.

My daughter (a micro preemie, surviving twin born at 26w6d gestation) gets all of her nutrition by feeding tube (g-tube) and has a severe Pediatric Feeding Disorder. In this letter I will only briefly go into her medical history, as this is all attached to this fax.

My daughter was released from the NICU at 1 month adjusted with an NG tube. G-tube was surgically inserted 3/06. She has spent her entire life with multiple emesis’ daily (up to 20x a day). She has a paralyzed vocal chord from her PDA ligation surgery while inpatient the NICU. She has been fed 100% via feeding tube since release from the NICU. She currently has severe oral aversions, refuses to take 99.99% of any food orally, doesn’t know how to swallow food or know what to do with it, and often vomits/gags when food is in her mouth. We have tried weekly feeding therapy for 7 months by Kate Hemlock (paid for not by BS but my the Golden Gate Regional Center (a federal program for children at risk of disabilities).

Here is a description of Pediatric Feeding Disorder:

Feeding Disorders
A pediatric feeding disorder is diagnosed when children fail to consume an adequate quantity or quality of solids or liquids to sustain growth. Feeding disorders are fairly common in infants and toddlers, with approximately 25 percent to 40 percent of these children experiencing some difficulties with feeding. The incidence of severe feeding problems has been reported to be even greater—as high as 80 percent—in children with severe to profound mental retardation. In fact, the number of children affected by feeding disorders is growing because medical advances have reduced the mortality rate of children born prematurely, a population especially at risk. Feeding disorders typically develop for several reasons, including medical conditions (food allergies), anatomical or structural abnormalities (defects of the palate), and behavioral mismanagement (e.g., early or delayed introduction of solid foods, excessive parental anxiety during meals or delivery of inappropriate consequences for food refusal). In most cases, no single factor accounts for a child’s feeding difficulties. Rather, several factors interact to produce them.Awareness of risk factors and clinical presentations of feeding disorders, combined with appropriate referrals at an early age, will produce the best outcomes for children and their families.

We have requested Intensive Pediatric Feeding Therapy from Dr. M Patel, (http://www.clinic4kidz.com/). Blue Shield (BS) and our medical group, Brown & Toland (B&T) have continued to deny all requests for this therapy. Dr Patel offers a very specific therapy that very few national providers offer. She has a long-track record and has published many medical articles on the subject. (I have not included a copy of her resume to this fax, as it over 15 pages long.) If you would like a copy, either contact Dr. Patel directly, or let me know and I can forward it to you.

If you are not familiar with Pediatric Feeding Disorders (as most of the medical and general public don’t understand that eating orally is not “instinctual”, here is a CNN news link that helps explain Feeding Disorders: http://www.kennedykrieger.org/video/cnn_feeding.wmv

The only other option besides Dr Patel is a multiple moth-long, more expensive in-patient feeding therapy program at Kennedy-Krieger (KK) in Baltimore http://www.kennedykrieger.org/kki_cp.jsp?pid=1574 . Dr Patel received her training at KK. Dr Patel’s program is unique as she works in the home, the natural environment where the child will be fed there day to day meals, whereas in the KK program, after the child comes home, the parents still have to learn how to feed the child.

They wrote in their denial letter to me: “The principal reason is that your medical group can provide appropriate services for your medical condition with in-network providers and facilities.” The secondary reason is due to questionable medical necessity. Per BS and B&T request, I was able to schedule an urgent appointment with CPMC (our in-network provider). They concurred with the rest of Kaitlyn’s medical team that they (CPMC) cannot provide the needed services and that only a provider such as Dr Patel trained in Pediatric Feeding Disorders can provide these intensive services.

This newest evaluation was sent to B&T and they are still refusing to cover Dr Patel’s services for my daughter. I do not have a new denial letter (this was told me verbally by B&T case worker on 7/5/07), as they said the original denial letter still stands (dated 5/20/07). B&T current stand is that my daughter’s disorder is “behavioral” so it is not a covered medical benefit. (Note that Kaitlyn’s entire medical team states that her disorder is medical in nature).

Just last week over the 4th of July holiday, we visited Lake Tahoe for our first vacation since my daughters’ were born - Kaitlyn was back up to vomiting 6 times a day. How can this be behavioral I ask? As quoted from the description of a Pediatric Feeding Disorder: “Awareness of risk factors and clinical presentations of feeding disorders, combined with appropriate referrals at an early age, will produce the best outcomes for children and their families.”

My BS EOC Benefit Plan booklet states: “When no Plan Provider is available to perform the needed service, the Personal Physician will refer you to a non-Plan Provider after obtaining authorization.”

All of the letter’s from Kaitlyn’s medical team concur that there are severe long-term consequences from delay of treatment for her feeding disorders:

From CPMC feeding clinic, “Developmentally there are windows of time where children are more open to being shaped for weaning and it’s important to take advantage of these “windows.” It is therefore recommended that Kaitlyn receive intensive daily in-home therapy that can provide medical management of Kaitlyn’s reflux while developing effective treatment methods the parents can incorporate into their daily routine.”

From her PCP, : “She has failed to progress despite all the wisdom and experience that has been tapped by…”numerous Pediatric GI, who are on the B&T panel.” It is medically necessary for Kaitlyn to try the approach to feeding aversion offered by Dr Meeta Patel.”

From her Feeding Therapist after weekly visits over 7 months: “Due to the developmental window that is very important for children to acclimate the orally sensory system to accepting different types of foods, and textures, it is very important that Kaitlyn begin to accept food consistently..

From one of her GI Doctors: “Given her limited progress despite such intensive therapy to date, I feel that with her underlying medical conditions she requires a higher level of intervention. …her feeding difficulties will only worsen with time if not corrected at an early age and she will remain G-tube dependent for years to come. Therefore I would like to pursue any and all avenues to achieve our goal of weaning Kaitlyn from her G-tube feeds.”

The Medical profession is very quick to insist that children with feeding issues go under the knife to have feeding tubes inserted. Although these tubes allow the child to thrive, they in turn cause significant long-term feeding issues, as the child never learns to eat orally or to feel hunger.

I feel my insurance is denying my case partially because they know once they approve Dr Patel for my daughter; they will have to approve her services for other tube-fed children that are in a similar situation.

As a side-note, Dr Patel is currently under contract with Kaiser, as they determined that they do not have an in-network service that offers the same therapy as Dr Patel’s program. I know for a fact that Kaiser has approved other patients to see (with success) Dr Patel’s program.

In addition to loosing a child and all of Kaitlyn’s prematurity-related medical issues, therapy and doctor visits and the strain it’s put on my family, a 100% tube fed child is extremely difficult situation to manage. I cannot main-stream my child in any child-care providers or schools. I cannot have family members give us a break. My husband and I never get a break from her care. We are a two income family. Needless to say, the stress of having a tube-fed, vomiting child is indescribable.

Putting aside the fact that having my daughter eat orally like a normal child would be a life-changing event for my family; my insurance currently covers feeding tube supplies, formula and nursing expenses. If we can get my daughter off the feeding tube, the long-term savings for BS would be substantial.

My daughter is due to start Dr Patel’s intensive feeding therapy program on 7/16/07. As indicated above from Kaitlyn’s medical team, the longer her treatment is delayed the worse her situation will likely become. I too feel it would be detrimental to delay this treatment.

Thank you for your review of this issue. I can’t tell you how many endless hours I have spent on it, as you can tell by this comprehensive packet of information I am attaching.

Feel free to contact Dr Patel, any of Kaitlyn’s medical team, her case worker at B&T or myself if you have any further questions. I look forward to your assistance in this urgent matter.

Regards,

Liz McCarthy
Mother to Kaitlyn McCarthy

Attachments:

IMR Application
This cover letter dated 7/13/07
Kaitlyn McCarthy Discharge Summary (NICU)
List of current Physicians
Letter, 5/10/07 to Brown & Toland from Liz McCarthy
Brown & Toland Service Denial – 5/20/07
Letter, 5/23/07 to Brown & Toland after first denial from Liz McCarthy
Letter, 5/24/07 from Dr. R, GI, UCSF
Letter, 5/24/07 from Dr D, PCP (I don’t’ have a copy of Dr D's original request for this service)
Consultation Note – 9/14/05 from K, Speech Pathologist
Progress Note – 5/25/07 - from K, Speech Pathologist
CPMC – NICU Developmental Evaluation 5/30/07
Blue Shield, 5/31/07 notice of request for appeal
Blue Shield , 6/8/07 - notice of denial
Evaluation Note – 6/26/07 – CPMC Feeding Clinic
Clinic4Kidz Feeding Disorders Program Overview
Clinic4Kidz Treatment Fees
Copy of email to Dr S, CMO of Blue Shield
Dr Patel CV is NOT attached. Please contact Dr Patel directly for a copy of her CV

Well, gotta go, it's midnight, I have to get up from the computer now to go fill a 60 cc syringe and push it in to my daughter's belly..... and then do it 2 more times, as I got behind her night-time feed sitting her for the last few hours writing this letter.

Ah yes, it's my life......