Category Archives: cleft palate

Will that be baby or a set of plastic horns?

More and more mothers these days are turning to exclusively pumping for their babies according to an article over at Time Magazine.

Why?

The article gives several reasons from not wanting a baby at your breast to “having other things to do” besides nurse to not wanting the humility of having to nurse in public.

As a mom who has fed her children via exclusive breastfeeding, exclusive pumping, and with formula, I have to say while I understand and I’m glad these moms are at least giving their children the benefit of breastmilk, I’m a little befuddled.

I exclusively pumped for our second daughter for seven months and hated it. I hated the pump. The horns were cold, hard, and didn’t offer to cuddle with me when we were through. They didn’t fall asleep on my lap, snuggled up next to my breasts. No, instead I had to sterilize them and return them to their waiting positions on the kitchen counter. Why did I pump? I pumped because my daughter was born with a cleft palate and therefore physically unable to nurse. As she was facing multiple surgeries to take care of a few issues including closing her palate, I saw my breastmilk as important medicine that would help get her through those early few months with some extra protection. It wasn’t because I wanted to save time (and by the way, nursing a baby does save time – it’s not a Hoover of time as some of these moms would have you believe), it wasn’t because I had other things I had to do, and I would have proudly nursed her in public if I could have.

What’s interesting is that this article cites a research study which showed that not breastfeeding mimics child-loss.

In an intriguing paper published in July in the journal Medical Hypotheses, Gordon Gallup, a professor of biopsychology at the University of Albany, posits another upside to sticking with the breast: a mother’s decision not to breast-feed may unwittingly mimic child loss, evolutionarily speaking. Given that bottle-feeding technology did not exist for the last 99.9% of human evolutionary history, Gallup reasons, the likeliest reason a mother of yore would not have breast-fed is the death or loss of the child. He suggests that the consequences for the bottle-feeding modern-day mother could include an increased risk of postpartum depression and difficulty producing milk. (Read More from the article by clicking here)

There are several other reasons to nurse directly:

  • Heating breastmilk may cause some nutrient loss
  • Pumping requires a high level of sterlization of pump parts and bottles. (Trust me as someone who’s been there – this is time consuming! And I even used Medela’s microwaveable steam sterilization bags!)
  • Freezing milk also causes nutrient loss
  • Some breastmilk does not store well due to an enzyme that cause it to become foul smelling and tasting
  • Time limit on how long breastmilk can be at room temperature. While it CAN be out and about longer than formula, there is a limit. Nursing directly does give you more freedom to do whatever you want to do.

I have always been very supportive of moms doing whatever they feel they need to according to their own family philosophies but this takes the cake. With our third child, I was faced with having to pump again because he wasn’t gaining enough weight with just breastmilk. (My supply had dipped due to some severe emotional trauma). After a day of consideration, I decided to move straight to formula. I could not go back to pumping because I knew where that would lead me and frankly, I just was not ready to return to that dark place.

For any mom out there who is considering to exclusively pump instead of nurse, please know that it is a LOT HARDER to EP than it is to nurse. It takes a lot of dedication, a hospital grade pump to really get a decent supply going and continued, and EP’ing is a lot more time consuming than nursing. Please educate yourself about the pro’s and the cons before jumping into the exclusively pumping pool. It’s filled with some deep water, ladies.

Given the choice, I’d choose baby over horns ANY day.

The Power of the anniversary

"A Floating Red Balloon" by jcarlosn @ flickr.com

Put the past behind you.

Move forward.

Be happy about how far you have come since (fill in the blank).

These are all common phrases people love to shoot off when they know someone is struggling to deal with something which happened in the past. While they are certainly lovely sentiments, the one thing people who give voice to these phrases do not know is that memory is very organic. Sure you can do your best to decide to deal with a tragic event in a positive way but then there are the memories which sneak up on us and scare us to death. The anniversary of the birth of my daughters and the anniversary of my time in a mental ward for Postpartum OCD are a few memories which did just that to me.

I am not alone in this experience.

Many women struggle when reaching their child’s first birthday, their hospitalization date, miscarriage date, or the date on which they lost a child. These are all events that leave more than a glancing blow. The fight to return to the “new normal” is an uphill battle. And once the “new normal” arrives and you’ve unpacked the last box, there’s a looming date trouncing your way ever so cheerfully. Sure you can bob and weave but even the best of us may find ourselves down for the count after a few sucker punches.

A fellow PPD warrior mom, Helen Crawford, shared with me that her 1yr anniversary was very traumatic. She could smell/hear the memories of the year before. “My fingers burned. I talked with my therapist. Surviving severe depression is like surviving extreme trauma. I took the finger burning as a reminder to ‘love myself more’ and say thank you to my body.”

Today my three year old daughter found pictures of herself as an infant. Awwwwww, you say. But these particular pictures included a feeding tube taped ever so gingerly to her less than 24 hour old cheek with cute teddy bear gauze tape. Classic symptoms consumed me – heart in throat, check, rapid shallow breathing, check, rapid pulse, check, dizzy, check. Oh.CRAP. She’s been flashing them here and there for the past week and I’ve been ever so nicely sidestepping the issue. But today, today she wanted to know WHAT that was on her cheek and why it was there. Oh boy. And I thought the hard question with kids was supposed to be “Mommy? Where do Babies come from?” (And for the record, I GOT that one today too from her 5 year old sister – what a day!)

Suddenly, there I was again. Curled up in the hospital bed, crying my heart out, aching, hurting, wanting to go back in time to BEFORE the birth, for someone to warn us about the rabbit hole into which we were about to trip. What.the.hell???

She knows about her cleft palate and knows doctors fixed it. She also knows which belly button came from mommy and which one belongs to the doctors. But we have never discussed the tubes. NEVER. As playfully as I could, I explained to her that because her mouth had a hole in it when she was born, she had to eat with a tube which went in through her mouth and went allllll the way down to her stomach. (I can still hear her laughing because I tickled her as I told her this.) Inside, I was dying. I smelled the NICU. I heard the sounds, the crying, saw the tense faces, the reserved mouths as they asked about worst case scenarios. I thought I was going to pass out when she said she wanted these pictures – the tube pictures – up on her bedroom wall. I softly replied that Mommy would have to think about it.

I thought about it all day. ALL day. Once she got home from her 2 hours of special needs pre-k for her speech, we talked. Honestly and age-appropriately. I told her that when she was born while I was very happy to meet her and get to know her, all of the medical stuff surrounding her birth like the tube feedings and surgeries were very difficult for Mommy to handle. And that it was very hard for Mommy to look at pictures of her with tubes and such attached to her. I promised her we would find some different baby pictures to put up on her wall. I also told her that it was ok she had to use a tube – and I was glad the nurses and doctors knew just what to do to help her grow strong so she could become the amazing silly little girl she is today. She was sad but seemed to take it in stride.

To top things off, 12 years ago today, my maternal grandfather passed away suddenly after experiencing congestive heart failure. Yay for anniversaries, right? (And in 19 days, I’ll be marking the anniversary of my paternal grandfather’s death which left me grandparentless. I was a real ball of joy 12 years ago, I tell you what!)

Grief is a tough thing to handle. 12 years ago I dealt with it in a very physical and raw manner. I remember crying, screaming, and punching my then boyfriend until I would literally black out. Healthy, right?

The thing is to give yourself PERMISSION to mourn/remember/accept whatever it is that your anniversary centers around. Celebrate how far you’ve come since said event. Honor the event but also do something to help propel yourself forward. One of the last things my maternal step grandmother said to me (in what I now know was her I know I’m dying soon so I better get this out while I can speech) was to always be the best that I could be no matter what stood in my way. Those words have stuck by me. And even in failure, I’ve always strived to do every single thing that I possibly could before giving up. It’s part of what got me through my PPD. I knew I was better than PPD. I KNEW I had to turn and fight. And every time I have an opportunity to help another mom through her struggles, I am celebrating my anniversary. I am celebrating no longer being alone. I am paying forward the help I received. I am choosing to walk the line between remembering the past yet striving for the future. I AM HERE to do that. And for that, I am grateful.

Remember to celebrate YOU on your child’s birthday too. It’s not just your child’s birthday – it’s YOUR own personal Mother’s Day. Don’t rush around for the kid without stopping to breathe for yourself too. Sure, Hallmark doesn’t make a card for this but that makes it all the more special, right? You’ve earned it. You’re worth it. And doggonnit, we like you. In addition, the more positives you make out of a negative, the less power it holds over you. Darkness cannot win when bathed in light. Choose to regain those reins as you approach your anniversary – whether it’s childbirth, miscarriage, hospitalization, recovery – it’s ok to cry. But it’s totally awesome to party too.

My Premature Gift

Today, November 17th, is National Premature Birth Awareness Day.

Hello, my name is Lauren. I am the mother of a prematurely born child.

(Hello, Lauren – that’s your line. C’mon – all together now. Hello, Lauren!)

Our second daughter was born three and a half weeks early after 42 grueling hours of labor. I was not on medication during my pregnancy with her. 30 minutes after birth, the lactation consultant discovered she had a cleft palate. Within 24 hours, she was an hour away at a Children’s Hospital in the NICU while I recovered for another 48. Within 9 days, she had her first major surgery. Within 21 days, she had undergone two more surgical procedures. The first five months of her life saw a grand total of six surgeries. Since then she’s had two more. Our daughter will be four in March and has already had eight surgical procedures.

She drank from a special bottle when she was not being tube fed. I pumped exclusively for seven grueling months stopping only because my mental health depended on me making a very difficult decision. While she does not struggle with basic needs as much as she did, it still takes her longer than usual to chew because her bite is lopsided. You see, her teeth only meet when she grits them together at one pivotal side – the right side. Her speech is garbled. I can only understand 50 – 75% of my own daughter’s speech. (Ok, cue the tears) Do you hear what I am saying? Out of everything my daughter excitedly tries to share with me, I miss up to half of it most of the time.

This past spring she had additional surgery to fix her pharyngeal flap. This flap closes off the airway between her nose and throat. Speech ordered the surgery to help with her nasal emissions. It’s helped some but it’s still an uphill battle given her poorly aligned jaw and all the air it allows through when she attempts certain sounds. And she’s trained her vocal chords to compensate for the lack of a pharyngeal flap. But you know what? She can say “s” now. Perfectly. I can tell it apart from an “F.” And she can blow up a balloon, blow bubbles, and clearly say “Please Push me mommy!” Most importantly, she can now clearly tell me I am STILL her best friend.

While in the NICU she underwent genetic testing to locate a potential cause or additional factors for her isolated bilateral complete soft and hard palate (that means there was NO palate up there on either side, hard or soft. Hard is when you put your tongue straight up. Soft is when you slide it back towards your throat.) But there was no additional genetic reason. She was diagnosed with isolated Pierre Robin Sequence. This more often than not occurs in boys, not girls. We hit the jackpot.

Despite all of her hardships, all of her struggles, all of the things she will face as she grows and has to overcome new challenges and issues, Charlotte is one of the happiest people I have ever met. Her goal in life? To make us smile and laugh. All the time. For real (to steal a phrase from her).

I went through hell with her. Emotionally, physically, every kind of -ally you can think of. I was there. Gripped on for dear life. Looking back, I know I was depressed during my pregnancy with her. Weighed down with an unresolved postpartum depression from my first pregnancy. Cleft defects often happen within the first 6-8 weeks of pregnancy. Before I even knew I was pregnant our angel was already awaiting us with a huge surprise all her own.

Where am I going with all of this?

I’m filling you in on how hard it is to be a NICU parent of a premature baby. What kind of challenges we face. How it doesn’t all end when we step out of the sterile nursery where our children spent their first days, months, or possibly year. We worry when things come up – anything – about it being related to something that happened at birth – is this because of such and such? She’s got a cold. How will this affect her airway? Should I let her sleep on her back if she’s so congested? What if she stops breathing? And so the monster is fed.

But on the flip side I am truly amazed at how often I manage to deny the monster his food. How often I am able to keep a cool head and maneuver my way around the big issues. I remember time B.C. (Before Charlotte). I would watch shows filled with parents of special needs kids. Amazed I would wonder where on earth they found the emotional stamina to wake up in the morning and face another day knowing the challenges that lay in store. But they did and I do. I look forward to her giggles. I look forward to her playful eyes, her hugs, her kisses, her tantrums, her excited babbling when her bus is about to arrive. And sometimes I want to cry. But mostly I want to rejoice. God has gifted me a perfect Angel and one day, in HIS time, I will understand her perfectly.

Just Talkin’ Tuesday 08.11.09: Breastfeeding & PPD

Original Photo "the breastfeeding lady 2" by Raphael Goetter @ flickr

Original Photo "the breastfeeding lady 2" by Raphael Goetter @ flickr

When I gave birth to my second daughter I saw my dreams of a normal postpartum smashed upon the rocks just 30 minutes after delivery. A delivery after 42 hours of labor, 36 weeks of pregnancy spent un-medicated but largely depressed and unaware of any potential issue facing us. We fully expected (as any parent) a healthy child, normal delivery. A large part of my smashed dreams tied into the hard reality that I would absolutely not be able to nurse her because she was born with a cleft palate so wide and large that it would be physically impossible for us to do so.

Later that day I was faced with a crucial decision. What kind of formula would I prefer for my daughter? I cried. She wasn’t SUPPOSED to get formula! That evening found me hooked up to a hospital grade pump praying for anything to happen. I barely squeezed out a drop. But I persisted and pumped for her faithfully until she was seven months old. I even researched everything I could in order to try to get her to nurse – books, cleft organizations, the La Leche League, the local Lactation consultants and even going to a training to become a trained Certified Lactation Counselor (which I completed one month AFTER we stopped nursing!) I left no stone unturned! Charlotte and I used SNS, nursing shields, and sheer determination. She eventually nursed for almost five minutes! Those five minutes were so amazing words cannot even begin to describe. In fact, it was tears falling from my face which interrupted the glorious event.(You can read more about our journey here: Breastfeeding Charlotte)

But at seven months, I faced a decision. My desire to continue to give breastmilk to my daughter or my mental health which had deteriorated so much it was adversely affecting my relationship with my husband and other daughter. With a heavy heart, I drove to Wal-mart to purchase formula. I cried the whole way home. Eventually I made peace with the decision. “Hanging up the Horns” or HUTH as it’s called in the world of exclusive pumpers, was a difficult decision. But one I was glad to make as it allowed me to bond with my entire family. I had come to resent Charlotte for all the extra work she required. But now, all I had to do was pour, heat, and I was done. I made strides towards better mental health and so did the rest of the family.

For me, the decision centered around the stress providing breastmilk created. I was also on medication which can be another tremendous issue for new moms. Many mothers don’t want anything crossing over to their infant through their breastmilk. Dr. Thomas Hale, author of Medications & Mother’s Milk, is a wonderful authority on the topic as are the researchers at Motherisk in Canada. When nursing while on any medication, it is important for the infant’s pediatrician to be aware of the medication and dosage amount so baby can be monitored for any adverse reaction. The decision to take medication is a personal one and should be made carefully with the help of professionals. Ask questions. Make sure the prescribing physician KNOWS you are nursing. And do not let them force you into quitting nursing if it is the one thing in which you find comfort. If you are currently struggling with this decision, please read this wonderful essay by Karen Kleiman: Is Breast Really Best?

So let’s get to Just Talkin’ Tuesday already!

Did your Postpartum Mood & Anxiety Disorder affect your nursing decision? Did you decide to formula feed to help improve your mental health? Do you regret your decision? Made peace with it? Did stopping help? Did your desire to nurse increase your desire to seek natural treatment? Speak up! Share!

(Absolutely no bashing for deciding to formula feed will be tolerated here. We respect the decision of all mothers to choose the course of treatment/feeding they feel is right for their families. Any posts discrediting or attacking a mother for her decision to formula feed will not be approved.)

Thoughts on exploring a “Pregnant Pause”

An article in May’s issue of Vogue entitled “Pregnant Pause” by Alexis Jetter attempts to provide insight into the very confusing world of the pharmacological treatment of depression or mental illness during pregnancy. Ms. Jetter seems to have done her homework. She brings up some very valid points, includes supportive research, referring to specific studies all framed within a heart-tugging story of a boy born with a heart defect as a result of his Mom taking Paxil during her pregnancy. Yet Ms. Jetter forgets to tell both sides of the story. Here’s my take on the article.

In no way am I belittling this Mom’s experience by rebutting some of Ms. Jetter’s claims. As a Mom of a special needs child, I know first-hand how difficult life becomes as you work with and around your child’s needs. I also understand the enveloping guilt which rages inside you every time you see your child suffer or struggle and wonder “Did I do that? Was it my fault?”

You see, I didn’t take my pre-natal vitamins during my second pregnancy. At first it was because of the wretched morning sickness. Then I just didn’t want to take them. I even pondered what would happen if I didn’t take them, thinking it would be a neat little “experiment” to find out.

When my daughter was born with Pierre Robin Sequence which included a complete and bilateral cleft of her hard and soft palate, I felt a guilt that cannot begin to be described by any words known to mankind. It took me nearly two years to admit this to anyone. I lied at the hospital when I was asked if I had taken my prenatal vitamins. Why? Because I knew from my mom’s quick research about PRS that lack of folic acid in the maternal diet increases the risk for this particular condition. The last thing I needed was for the doctors to also blame me for my monumentally bad judgment. Looking back, I’m pretty sure this erratic behavior was directly related to my untreated issues with Postpartum OCD/Depression after the birth of our first daughter.

To this day as my daughter struggles with speech, socialization, and a myriad of other challenges, I still blame myself somewhat. Intellectually I know her problems are not my fault. I have accepted this on that level. But a small part of me will always wonder if she would have these problems if I had just taken my vitamins. So I get it. I get the guilt, I get the hind-sight. I get the anger and outrage. And I definitely get the need for education and informed consent.

What I don’t get is the desire to limit treatment options for other people. Instead of limiting, let’s encourage the development and shared knowledge of non-pharmacological therapies for mild cases of depression during pregnancy such as altering your diet, increasing exercise, natural supplements, psychotherapy, to name a few. Instead of judging, let’s allow women to make their own decisions regarding their mental health treatment. (you can read more on my thoughts regarding the ante-partum medication conundrum here)

Just as with those who are passionate for home-birth and those who are passionate for breastfeeding, there is a caution to be heeded here. We cannot convince a woman who is determined to have a caesarean section to have home-birth just as we cannot convince a woman who is convinced that a pill will solve her problems to try other therapies. All we can do is provide the education, statistics, and support. Then we need to step out of the way and let the woman make the decision with her medical professional team.

We can only fix ourselves, not those around us.

Now, onto the meat of the article, if you will.

After we meet Gina Fromm and hear of her difficult experience as a result of taking Paxil during her pregnancy, we are introduced to Dr. Anick Berard, PhD and Professor of Pharmacy at the University of Montreal. He discusses his study on Paxil, concluding that “..now other people have done the studies, too. And I’m much more comfortable saying that Paxil is a bad drug to take during pregnancy.”

Really, Dr. Berard?

I found a more recent study undertaken by none other than Dr. Anick Berard which concludes that unless the dose of Paxil is above 25mg during the first trimester, Paxil usage is not associated with an increase in congenital cardiac malformations when compared with non-SSRI usage. (Typical therapeutic dosage for Paxil can range anywhere from 10mg to 40mg.) When researching it’s not difficult to find studies to contradict one another but when you find them from the same researcher it’s a bit odd.

Next we meet Carol Louik, Sc.D, author of one of the two studies released in June of 2007 extolling the small risk SSRI’s posed to the human fetus. Turns out Carol’s study was partially funded by GlaxoSmithKline, Sanofi Aventis, and another Pharmaceutical Company. However, at the same time Carol’s study was published in the New England Journal of Medicine, another study was also published. This study was coordinated by the CDC out of Atlanta and did not have any financial disclosures to the Pharmaceutical Companies. Sura Alwan, MSc, and Jennita Reefhuis, RN, were first and senior authors respectively. Their study concluded the absolute risk of exposure vs. non-exposure not to be much different than the standard baseline risk for defects in any healthy pregnancy.

But the Alwan/Reffhuis study results are not present in the Vogue article.

Then we’re tossed this golden nugget – “….SSRI usage dramatically increases the chances that a baby may be miscarried, born prematurely or too small, suffer erratic heartbeats, and have trouble breathing.” The author further states that “Taken together the NEW research caught many experts by surprise.” Yet most of the research articles I located by the researchers quoted were from 2006 or earlier. This is hardly NEW research. In fact, the NEW research contradicts many of the studies referenced in the Vogue Article.

For instance, we’re informed through a quote from Dr. Adam Urato, M.D. That “these antidepressants are portrayed almost like prenatal vitamins that will level out their mood and lead to a healthier baby. But antidepressants have not been shown to decrease rates of miscarriage or birth defects or low birth weight. On the contrary, they’ve been shown to increase those problems.” Then directly after this quote, Ms. Jetters states pregnant women are routinely excluded from clinical tests of new drugs. But she fails to ask a very important question.

Why?

A solid answer can be found in the February 2009 Carlat Psychiatry Report, an unbiased report regarding all things psychiatry related, including medication. According to an article entitled “Psychotropics and Pregnancy: An Update,” the Carlat Psychiatry Report states “the gold standard study will never occur. It will never be ethically permissible to enroll pregnant women into a randomized, placebo controlled trial designed to determine if a drug causes birth defects. For this reason, we are left with less than ideal methods of determining risk.”

To seemingly substantiate Dr. Urato’s quote regarding miscarriage, birth defects, or low birth weight, a study performed by Developmental Pediatrician Tim Oberlander, M.D. At the University of British Columbia is briefly examined. This study concluded after tracking the birth outcomes of 120,000 women that infants exposed to SSRI’s prenatally were born too small and have trouble breathing. Oberlander’s quoted conclusion for the article? “It’s not the mother’s mood,” Oberlander says. “It’s the medication.”

Yet Oberlander’s study is negated by Einarson’s study, “Evaluation of the Risk of Congenital Cardiovascular Defects Associated With Use of Paroxetine During Pregnancy” Einarson also writes a letter to the American Journal of Psychiatry, (located in Vol. 64, No. 7, July 2007) which states the conclusions made by Oberlander and others is not supported by the data presented. Einarson points out that low birth weight was not stated as an investigated outcome and that only average weight of newborns and proportion falling lower than the 10th percentile (ie, small for gestational age but NOT low birth weight. Low birth weight is technically defined as >2500g2.

Einarson’s study combined both prospective and retrospective methodology to examine a large number of women specifically on Paxil. Their conclusion? “Paroxetine does not appear to be associated with an increased risk of cardiovascular defects following use in early pregnancy, as the incidence in more than 3,000 infants was well within the population incidence of approximately 1%.”

Just in case you’re wondering, no, their study was not funded by GlaxoSmithKline. The Carlat Psychiatry Report is quick to point out that seven of the nine authors received no funding from GSK or any other drug company but two have received funding for drug research from other drug companies but not GSK.

The Carlat Report also address what one should do with conflicting information regarding medicating during pregnancy. The best one can do from a “medico-legal perspective is to avoid paroxetine. But the data does suggest that paroxetine – and perhaps by extension, all SSRI’s – may be safer than what has been suggested by other smaller studies.”

Going back to the issue of pre-term delivery as well as low birth weight and their relation to mood or medication, a recent study released by Dr. Katherine Wisner examines this very topic. The study looked at 238 women with no, partial, or continuous exposure to either SSRI treatment or depression and compared infant outcomes. Dr. Wisner’s study found that exposure to SSRI’s did not increase birth defects or affect infant birth weight but the importance of this study lies within the finding that the pre-term delivery rates were the same with depression exclusive of SSRI treatment, leading the researchers to state that it is “possible that underlying depressive disorder is a factor in pre-term birth among women taking SSRI’s.” Dr. Wisner also encourages further research into this topic even though her study was just released this year. You can read more about this study by clicking here.

Rita Suri, M.D. from UCLA also studied this very situation, publishing her research in August 2007 in the American Journal of Psychiatry. Not surprisingly, Suri’s study is quoted in the Vogue article. Her results found that infants born to women taking SSRI’s were three times more likely to be born prematurely (although most were only 1 week early) She also found that the higher the antidepressant dose, the higher the risk of early delivery. However, her results did not show that untreated mild depression had an effect on prematurity. I’d like to add a personal digression here. My second daughter was born at 36 weeks. While not officially diagnosed, I would say that I suffered from untreated depression during that pregnancy. Sure it’s not an official research study but it’s very hard to discount personal experience especially when it agrees with current research.

At this point in the article, we’re introduced to one of the more well-known disorders associated with paroxetine usage, Persistent Pulmonary Hypertension of the newborn. Tina Chambers, Ph.d, a birth-defects researcher from University of California at San Diego is the chosen expert for this topic. She states that this condition normally strikes only one or two infants in 1,000. But Chambers found that rates jumped between six and twelve per 1,000 for mothers who take SSRI’s. In contrast, a recent prospective study by Susan Andrade, ScD, concluded no relationship between SSRI usage and PPHN but did admit that given limitations of the study and small number of confirmed cases, further study in this area may be warranted. In Andrade’s study, 1104 mothers were followed with only 5 confirmed cases of PPHN reported.

Alexis McLaughlin’s story about her daughter’s struggle with PPHN is striking, especially for me, because I’ve seen my daughter struggle for breath immediately after birth. Her quote, “It’s difficult because you need good mental health and a healthy baby,” is very reminiscent. You do indeed need good mental health and a healthy baby. When I was pregnant with Charlotte, we told people we didn’t care about gender, all we cared about was health. But if that doesn’t happen? You do your best to get through it because there is nothing you can do to go back and change what was done in the past. We can only move forward, changing what we can, and if we can’t change it, we change the way we think about it. Even with a normal pregnancy given no SSRI exposure or depressive exposure, a mother faces a 3% risk of giving birth to a child with a birth defect of some kind.

We are then moved into the science behind the affect of an anti-depressant on the human fetus. It’s hypothesized that serotonin is responsible for sending “crucial developmental signals to the fetal heart, lung, and brain….[and that]…SSRI’s, which prevent the body’s natural absorption of serotonin, could be tampering with essential cell growth.” A study by Francine Cote concludes that maternal serotonin is indeed involved in fetal development, precedes the appearance of sertogenic neurons, and is critical for development. The latter hypothesis regarding the interference of SSRI with essential cell growth has been and I’m sure will be studied for quite some time.

Shortly after this, the article winds down by warning of the “small coterie of influential doctors who…underplay the dangers of antidepressants,” again, a quote from Dr. Adam Urato. I do agree whole-heartedly with the latter part of his quote: “We want and need expert opinion that’s free from industry influence and from the appearance of bias,” Urato says. “It’s just outrageous that doctors have to work with that.”

Any of the several women I’ve come across who work with the Perinatal Population will be some of the first to admit that yes, there are risks to taking medications while pregnant or nursing. We even inform women we support to not only weigh the benefits against the risks by researching their options but let the professionals determine if the situation is severe enough to warrant medication.

Dr. Katherine Wisner examined this Risk-Benefit relationship in a study back in 2000. In this study, Dr. Wisner encourages physician and patient communication through the use of informed consent, provided the patient meets the legal definition of competent. She also recommends a family member or friend of the patient be present to help alleviate any anxiety and to ask questions the patient may not think of asking regarding any medication decision.

Many of the recommendations Dr. Wisner sets forth should be commonly used by a competent physician. Unfortunately there are physicians who do not follow informed consent and instead pay attention to the perks offered by Pharmaceutical Companies. However; these perks are slowly disappearing as the medical community awakens to the ethical dangers they pose as a result of increased consumer advocacy for fair and informed treatment when it comes to mental illness. If you should find yourself with a physician who prescribes SSRI’s like m&m’s or refuses to listen to your situation, it is time to find a new doctor for your care. A good doctor will listen, research, and collaborate with you.

I want to close with a quote directly from the Vogue article by Gina Fromm, Mother to Mark Fromm, the little boy with the heart defect as a result of his mother’s usage of Paxil. I couldn’t say it any better than this.

“It is easier to take a pill,” Gina says. “But over the long run, that’s not the best solution. It certainly hasn’t been for my life.”

I agree Gina, I agree whole-heartedly.

In my opinion, society today has gotten in the habit of quick fixes instead of sustaining solutions. I personally think it’s time we change that. But let’s do so in a logical, evidence based, and bias-free manner. Otherwise we’ll all just end up stuck right where we are screaming at each other so loud we can no longer hear ourselves think.

What a week!

Monday was Charlotte’s cleft repair, pharyngoplasty surgery, and ear tubes.

Tuesday morning she got the nasal tube they put in to aid in breathing removed. Then she ate. And ate some more. And drank.

So we were discharged Tuesday afternoon.

She stopped eating Wednesday morning. Stopped talking by the middle of the day. She was also refusing all medication and foods.

We were instructed to return to the hospital.

So we did.

And there we stayed until yesterday morning when her appetite and fluid intake finally picked up enough to make me feel comfortable with bringing her back home.

Our stay was riddled with issues.

The first issue was failure to get written consent for her ear tube surgery. The surgeon took the time to track down where the breakdown in communication happened and did apologize to us but then just a few sentences later admitted that post-consent happens quite a bit in her practice with her adults. Yeah. We’re SO not going back to see her.

Second issue arose during our return to the hospital. The ER had a hard time getting ahold of Charlotte’s doctor to approve admission even though we had been instructed to return by them. We arrived at the ER at 830p but did not get a room until nearly 2a Thursday morning.

Third issue was our day nurse on Thursday. She was a bit flighty and had a propensity for over-explaining things and failed to be prompt in her attention to us. My daughter’s med pump went off repeatedly as did her fluid pump with no response from her whatsoever. She was apologetic and spent some time trying to kiss Charlotte’s behind but I had the nurse replaced. It’s not my kid you have to impress, lady.

Fourth and fifth issue happened on Friday.

Fourth: A tech walked into our room and asked if I wanted to give Charlotte a bath. I said that I did. So she got everything ready and decided we needed to give Charlotte a sponge bath in bed. We had Charlotte lean back over a bowl of water and wiped her hair down. The tech realized she didn’t have water to rinse with so she went and got some while I tried to keep Charlotte calm and still. The tech returned with the water and began to pour it on Charlotte’s head. Charlotte screamed. I reached up and felt the water. It was absolutely scalding. I immediately told the tech to stop and get out of our room. The water she had gotten was entirely too hot! She acted surprised and I had to ask her several times to leave the room. I asked our nurse to make sure she was not allowed back in our room. I didn’t see her again during our stay.

Fifth: At about 1p the phone in our room rang. I answered. It was a prank call. I hung up. They of course, redialed. I was very unsettled (they said horribly mean and rude things to me) and called our nurse. He came right away and handled the situation beautifully. Unplugged our phone and had our phone number changed. A report was filed.

I don’t tell you all of this to complain. I’m telling you all of this to stand strong. I got flustered only twice during our stays. The first was immediately after surgery when we had to hold Charlotte down as the anestethia worked its way out of her system. She was angry, confused, and frustrated. Kept pulling at her IV, her nose, and wanted to be done with all of the pain. I admit that I cried. It took four hours for her to finally calm down.

The second time was when we got prank called. I was very very scared. I didn’t know if it was someone from inside the hospital or outside. I felt very vulnerable and afraid. I even had a plan in place if someone we did not know were to burst into our room. But nothing came of it and I was able to get back to sleep within the hour.

I am glad this past week is behind us.

On a positive note, Charlotte’s speech is ALREADY improved. She’s saying words that we can now understand a lot more often. There are sounds she struggled with before that she is now making with seemingly no effort. We still have quite a bit of work ahead of us but for now, we’re miles away from where we were this time last week.

Last night was rough but I have hopes tonight won’t be as bad. I think she’s got some night terrors and trauma residuals going on as a result of spending the week at the hospital. Teething tablets and a night light finally helped her go to sleep on her own last night but she spent the bulk of the evening in the living room with me. We’re going to have her return to school so her mind will have other things to focus on as well to help leave the memories of this past week behind.

Raising Funds for Charlotte’s Cleft Surgery

Today I received a phone call from Charlotte’s Plastic Surgeon’s office. Apparently we have a balance with them that went by the wayside in the midst of all the NICU and PPD craziness. We were assured they would take care of it but here we are, nearly three years later and the balance still exists.

I am asking for help in getting this debt paid before her pre-op appointment on March 31st. I don’t know what else to do at this point. We’ve been asking family for entirely too much lately and don’t feel we can take this to them but also don’t want her to have to go without surgery that would help her speech improve. The balance must be paid in full before her pre-op appointment or the surgery will not go forward as planned.

I’ve created a Pledgie campaign where you can donate and help us pay off the balance. My deepest thanks go out to those of you who not only donate but help spread the word about our situation.

Click here to donate.

Charlotte’s Cleft Journey

I went back to Atlanta this past Thursday for speech therapy with Charlotte.

They did nasometry, a test that measures how much air is being pushed out of her nose during speech. Normal range is between 15 and 30. Hers is at 48 so quite a bit of air is escaping.

Sitting in the tiny room with Charlotte and the speech therapist was heartbreaking. I realized how hard she struggles with her speech and how much she’ll have to overcome. I know the surgery to repair her cleft and create a pharyngeal flap will help quite a bit but there are physical habits she’s developed to compensate that we will have to overcome and will need therapy for once the surgery has healed and she’s been cleared to pick back up with therapy.

It was very difficult for me not to cry as I realized the road that lay before us. When she was in the NICU, I was grateful her condition would not require life-long intensive care. I am slowly realizing that while not intensive, her condition will require life-long attention and therapy. Right now our focus is on speech but there will be dental issues, potential additional cleft repairs if for some reason it splits again as she grows.I also can’t help but blame myself a bit for waiting so long to return to the clinic with her. But i know that given the struggle I’m having with it now, completely recovered, I know I could not have handled it before now. She’s been thriving and it’s ok. It IS ok. Just need to keep telling myself that!

While we were in Atlanta, the Plastic Surgeon’s office called. We have a tenative surgery date for April 13th with pre-op on the 31st of March, just 10 days after her 3rd birthday. They wanted to originally do the surgery on the 2nd but we have a trip to Grammy & Pop’s scheduled for the 5th-11th so I asked if we could move it back. Thankfully they were able to do so.

Charlotte wants me to spend the night with her in the hospital (if she has to spend the night – we don’t know this yet). As of right now, the procedures planned for the 13th are: Soft Palate Cleft Repair, Pharyngoplasty (the creation of a naso-pharyngeal flap that will cut off the air escaping through her nose when she speaks), and her second set of ear tubes.

Keep us in your prayers as we move forward with all of this. I will be doing my best to keep up with the blog here but if for some reason I disapear for a few days, you’ll know why!

Results of the Great Return

I survived the day.

There were only tears as I made THE turn. They hit me out of the blue and after blubbering for a few minutes, I was fine. The rush of emotions was really quite unexpected. I had no idea how I would react once we got there. I worried the tears wouldn’t stop and I wouldn’t be able to go in with Charlotte but they subsided rather quickly as I forced myself to breathe and Chris reminded me we weren’t going to see her in the NICU.

Overall the appointment itself went well. Her plastic surgeon was very pleased with how well her jaw was growing on it’s own and didn’t seem to think surgery was going to be a necessity unless deemed so by Speech.

Guess what?

Speech said she needs surgery. Her palate is split in the back and he also wants a naso-pharyngeal flap done as well to help her not push air through her nose when it should be going through her mouth.

We go back next week for a session in their speech lab so they can teach me some things to do with her at home to help train her vocal track to do the right things.

We knew surgery was a very real possibility and as I said earlier, we’ve discussed it with her. The doctor’s office will be phoning us to talk scheduling once they get it cleared with insurance so we wait.

I’ll update here once we know more.

In the meantime, continue to pray for strength, guidance, and patience.

The Great Return

Tomorrow we go to Atlanta with Charlotte for follow up with the Cleft Palate Clinic.

I would be lying if I said I was not nervous.

This appointment was supposed to have taken place when she was nine months old.

She’ll be three years old next month.

Charlotte in the NICU

Charlotte in the NICU

It took me this long to get to the point where I could even think about facing the hospital where she spent her first 21 days of life without having an anxiety attack.

This is the same hospital in which I tucked myself into a corner of the sleep room in the NICU area, blasted Linkin Park over the MP3 player and checked out. No desire to come back. Just wanted to stay curled up under the blanket and pretend none of this was happening. Nope. Not to me. I didn’t have a baby in the NICU. She wasn’t downstairs having major jaw surgery at just nine days old. We weren’t doing this. I was stuck in the middle of a really bad dream and I’d wake up at home with a normal baby.

I can still see that hallway, that sleep room, my nostrils fill with the scent of the surgical soap that killed my hands as I washed them every time we went into the NICU, every time i pumped, every time I went to the restroom there.

I remember the pumping rooms in which I spent most of my time staring at the clock wishing I could nurse my daughter instead of shoving my breasts into hard cold flanges, flicking a switch on a massive antique pump, adjusting the suction to just below Holy Crap that Friggin Hurts.

But tomorrow is the day we finally go back.

Chris is going with me as a safety. I don’t know how I will handle this. I’m hoping for the best. Praying for the best. I keep thinking about how far we’ve come since then and how lucky we are that we don’t have a lot of the problems a lot of parents have with their Pierre Robin kids. She’s talking, using sentences nonetheless. She’s breathing on her own. She eats – oh lord, she eats – she’d eat herself sick (and has) if we let her. No oral aversions here.

But she does have a fistula – an opening in her palate repair. It’s at the back of the throat. And her enunciation is off – it’s nasal. She can’t say “s” without blowing air through her nose. Chris and I understand maybe 75 – 80% of what she says and it breaks our hearts that we can’t even understand our own child all the time. It’s led to frustration on both sides and is now turning into a discipline issue.

I’m afraid we’ll be told she needs surgery. I’m afraid of what that will mean for us and for her. I’ve talked with her about the possibility of surgery. She knows that they would give her some medicine to help her go to sleep and fix her mouth while she was asleep. That she might be owwwy when she wakes up and that they’d have medicine ready to help with the owwwy.

She seems cool with it.

I’m not.

I have forgotten how to let her go with the doctors – I got so good at it when she was in the NICU but she’s been all ours for almost three years now. I don’t want to hand her over to be taken to surgery. I want to go with her! That’s my baby you’re taking!

But now I’m thinking too much and need to stop and let God do all this worrying for me.

Please pray for us as we face tomorrow.

Pray for a peaceful heart and soul for me.

Pray for a pain-free and comfortable day for Chris as he goes with us.

Pray for a positive evaluation.

Pray that I am able to handle any news of surgery with strength and grace and truly give it to God.