Sunday, May 11, 2008
Happy Mother's Day
Thank you for being a part of my journey as a mother.
Wednesday, May 7, 2008
Canadian IVF Study
Helen Harrison here, reporting from beachside at Waikiki where I just attended the 2008 Society for Pediatric research:
Here was an excellent study of IVF that bears on the discussion at hand:
[4305.1] The Cost of Irresponsibility
Bridget Spelke, Annie Janvier, Richard Brown, Danielle Vallerand, Keith J. Barrington. Pediatrics, McGill University, Montreal, QC, Canada; Obstetrics, McGill University, Montreal, QC, Canada.
BACKGROUND: Multiple births increase the risks of fetal, maternal and neonatal morbidities. The present epidemic of multiple births is partly due to assisted reproductive technologies (ART). In contrast to Canada and the US, many countries regulate ARTs. In these countries, single embryo transfer (SET) during IVF is the norm. However, mothers with a history of infertility have increased perinatal morbidity even when a single embryo is transferred. In previous studies, 10% of women who have IVF and SET deliver before 35 weeks (and are therefore admitted to NICU).
OBJECTIVE: To determine the impact of ART on resource utilization and outcomes in our NICU.
DESIGN/METHODS: We reviewed all multiple births admitted to the Royal Victoria Hospital NICU born between April 2005 and July 2007. Babies and mothers charts were reviewed. Using modeling and our patient demographics, we estimated how many days of complications could have been avoided if singletons were born to these mothers, had SET transfer been used during IVF.
RESULTS: During that period, 82 babies from ART multiple pregnancies were admitted to the NICU, representing 17% of NICU admissions.
4 mothers (9%) had previously experienced the death of a premature singleton.
42 mothers gave birth to 75 babies following IVF (15% of NICU admissions): average GA = 32.2wks, mortality 7%, intubation 34%, 60% TPN, 88% gavage, 6% BPD, 12% NEC / perforation.
If SET had been used in these women, and only10% would have delivered < 35 weeks, we could have avoided: 6 deaths, 5 severe IVHs, 270 eye exams, 4 surgeries for severe ROP, 260 intubated d, 643 oxygen d, 950 TPN d, 2001 gavage d, and 3082 NICU days.
CONCLUSIONS: Although some multiple births occur spontaneously, the current enormous increase in multiples is human-made, the lack of legal or voluntary restrictions on ART practices are responsible for 17% of NICU admissions, bringing about unacceptable financial and emotional costs. These admissions could be avoided. To reduce the number of multiple gestations, many countries have made SET the norm, and have drastically reduced the rate of multiples, while overall not affecting the pregnancy rate. We should take example from these countries.
E-PAS2008:634305.1
Sunday, May 4, 2008 9:15 AM
Platform Session: Clinical Bioethics (9:15 AM - 11:15 AM)
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Tuesday, May 6, 2008
Guilt Revisited
Yesterday, while doing the dishes, I turned to check on Tyler. Since he is usually half in the dishwasher removing the dirty dishes that I've just placed there, I was surprised to see him sitting on the kitchen floor. He was playing with a ray of sunshine that was coming through the window over the sink. He'd "catch" it and then let it go. He spent time holding up jars of food (the cabinet was now empty) and holding them in the ray of light. He even figured out how to hold the jar so the light would bend. I was in awe. (he's going to be a rocket scientist ya know-hehe) There he was, playing by himself, with sunshine! It was a beautiful experience.
So, boy was I shocked when I was slapped with the guilt that followed.
As I sat there and watched my breathtakingly adorable child find wonder with a ray of sun I was thinking to myself, "wow, he is so much easier than Paige! So this is what it was supposed to be like."
How dare I compare my children! Paige has gone through so much. It's no wonder why she had a hard time as an infant and toddler (any beyond). How dare I feel comfort that Tyler is so much easier.
I was a mess yesterday. There it was again. That damn guilt. I thought I had left it behind years ago!
As I tried to fall asleep I felt sick. I had a headache, my back hurt, my stomach hurt. Damn guilt.
Then I forced myself to say good bye to it again. Let's hope it's gone for good.
Friday, May 2, 2008
The Purpose of My Blog...
I originally started my blog because I felt that the publics perception (both the general public and those in the medical field) regarding the long term impacts of prematurity was so far off from reality that it was damaging.
For years preemie parents, upon discharge from the NICU, have been told that their baby will be fine and will catch up to their peers by age 2 or 3. For most, this is not the truth. Besides the research, and having a preemie of my own, I have been a part of support groups for 9 years and have listened to countless parents ask, "why hasn't my baby caught up?". They have real concerns that are not being addressed by doctors and their family members begin to think they are neurotic. Over time relationships suffer, marriages end and the child eventually gets diagnosed with something that validates the parents original concerns.
There is a disconnect between the perception of life as a preemie and the reality.
Why?
It is simple. How many preemie stories have you heard of, in the mainstream media, where the parents of an older preemie are explaining what life is really like for their child? I'd be willing to guess that you haven't heard many.
This needs to change.
False perception is damaging.
Below you will find a media release about an interesting survey, that fits in with the focus of my blog, taken (with permission) from http://prematurityprevention.org/.
For immediate release
Contacts:
Jennifer Montgomery, (502) 418-6819; Jennifer@m2-maximummedia.com
Ali Shaw, (502) 262-8580; ali@m2-maximummedia.com
APPROXIMATELY 62% OF PREGNANT WOMEN SURVEYED IN SELECTED AREAS OF KENTUCKY DO NOT VIEW PRETERM BIRTH AS A PROBLEM
Findings in Contrast to Growing Crisis of Preterm Birth
FRANKFORT, KY, APRIL 22, 2008 — A survey among pregnant women receiving prenatal care in Ashland, Lexington, Louisville, Madisonville, Paducah and Somerset finds that approximately 62 percent felt that preterm birth was not a serious problem or indicated that they weren’t sure. The finding stands in sharp contrast to the fact that preterm birth is the number one cause of newborn death, and a leading cause of serious, lifelong disabilities.
The survey was conducted by Healthy Babies Are Worth the WaitR (HBWW), a three-year initiative and partnership of the March of Dimes, Johnson & Johnson Pediatric Institute, and the Kentucky Department for Public Health, aimed at reducing the rate of preterm birth in selected areas of Kentucky.
“We’re quite disconcerted by this finding, especially since preterm babies, even those born just a few weeks early, have more complications, such as problems with breathing, feeding, and their neurological systems,” said Ruth Ann Shepherd, M.D., FAAP, director, Adult & Child Health Improvement, Kentucky Department for Public Health.
This survey finding also stands in contrast to the results from a 2006 March of Dimes national survey in which only 11 percent of women felt that preterm birth was not a serious problem or were unsure.1
The preterm birth rate in Kentucky is 14 percent, compared to the national rate of 12.7 percent. Between 1994 and 2004, the rate of infants born preterm in Kentucky increased more than 24 percent. Nationwide, the preterm birth rate has increased more than 30 percent since 1981.
In addition, 34 percent of women surveyed in these six selected areas of Kentucky smoked during the month before becoming pregnant, which is much more than the rate of smoking among childbearing-aged women in the US (20.6 percent).2
During pregnancy, approximately 22 percent of women surveyed in the six selected areas of Kentucky smoked, which is about twice the rate reported for the US as a whole.3 Pregnant smokers reported smoking anywhere from less than 1 cigarette per day to 2 packs per day. This represents a quit rate from preconception to pregnancy of about 35 percent, which is much lower than the average quit rate during pregnancy in the US of 46 percent.4 Less than 38 percent of the pregnant women reported that their health care provider had spoken to them about the importance of avoiding smoking during pregnancy. Smoking is a major risk factor for preterm birth, low birth weight, birth defects, and many other adverse health outcomes.
The purpose of the survey was to obtain up-to-date information on the knowledge, attitudes, and reported behaviors of pregnant women. The information will be used to: provide data about the needs of each of the communities to guide the HBWW Initiative, especially in the development of educational and media materials; and to help assess the impact of HBWW through a comparison of results before the initiative began and after it ends (the same survey will be repeated in 2009).
Healthy Babies Are Worth the Wait R is helping Kentucky’s babies get the best possible start in life. Working with health care providers and community partners, the initiative helps moms-to-be get the care and information they need to increase the chance of having healthy, full-term pregnancies. It brings together the most current approaches for preventing preterm birth, as no single intervention is adequate to address the complex causes of this serious problem.
The goal is to reduce the rate of preventable preterm birth by 15 percent in the intervention areas. If successful, the interventions and lessons learned could make a difference if applied to other regions of the country with high rates of preterm birth. The initiative’s website, prematurityprevention.org, has sections filled with up-to-date information for pregnant women, those planning to become pregnant, health care professionals, and the general public.
For more information about Healthy Babies Are Worth the WaitR, log on to prematurityprevention.org.
About the March of Dimes
The March of Dimes is the leading nonprofit organization for pregnancy and baby health. With chapters nationwide and its premier event, March for Babies, the March of Dimes works to improve the health of babies by preventing birth defects, premature birth and infant mortality. For the latest resources and information, visit marchofdimes.com, marchofdimesbaby.org or nacersano.org.
About the Johnson & Johnson Pediatric Institute, L.L.C
The Johnson & Johnson Pediatric Institute, L.L.C. (JJPI) is an education-based entity within Johnson & Johnson Corporate Contributions, which has a mission to make life-changing, long-term differences in human health by targeting the world's major health-related issues. Johnson & Johnson fulfills this mission, and other philanthropic efforts, through community-based partnerships. Healthy Babies Are Worth the Wait is among programs Johnson & Johnson supports that focus on a key strategy of saving and improving the lives of women and children. For more information please visit www.jnj.com. Educational materials for use by physicians or parents are available at www.jjpi.com.
About the Kentucky Department for Public Health
The Department for Public Health (DPH) is a part of the Cabinet for Health and Family Services. Through its expansive services, DPH reaches thousands of Kentuckians each year by developing and operating all public health programs and activities for the citizens of Kentucky. These health service programs are aimed at prevention, detection, care and treatment of physical disabilities, illness and disease. More information about DPH can be found at chfs.ky.gov/dph.
-END-
1 March of Dimes. (2006). National Brand Study. White Plains, NY: Author. Childbearing age is defined as 18-44.
2 Peristats, March of Dimes. (2007). http://www.peristats.com
3 CDC. (2004). Smoking during pregnancy. Morbidity and Mortality Weekly Reports, 53, 911-915.
4 Coleman, GJ & Joyce, T. (2003) Trends in smoking before, during, and after pregnancy in ten states. American Journal of Preventive Medicine, 24, 29-35.
Thursday, May 1, 2008
Happy Birthday Bug!!

Even though we longed for more children, hubby and I could not bring ourselves to have another. We knew we could never forgive ourselves if another baby was born premature, like Paige.
But this pregnancy was a surprise. It was a long hard road too. I ended up carrying Tyler to 35.4 weeks.

I am not good at writing in this blog during times when I am very emotional. So, below you will find the journal entry from Tyler's private blog (written for family and friends). I wrote it on the day we brought him home.
We are ALL home. Wow that feels incredible to type!
Let's start with Monday, May 1st. I went in (at 8 am) for an amnio to determine lung maturity. After the test I was admitted to be monitored. I was 4cm at that time. I was having strange pains immediately following the amnio. I knew it had nothing to do with the amnio because it was no where near the site of the fluid draw. It did not feel like contractions either. But, I did know that something felt very wrong. The day was filled with us just sitting there, waiting for the results. Around 1:00 one of my OB's came to talk to us. 2 of the 3 markers for lung maturity were NOT there. She said that, if it was up to her, she would not do the c-section that day. But, it wasn't up to her and she told us that my regular doc (high risk OB) would be in soon to talk to us.
She decided to check my cervix. I was now dilated past 5cm. Between the further dilation and the pain I was feeling, she was no longer on the fence. She told us that Tyler was going to be born very quickly.
On Monday May 1, 2006 Tyler was born at 4:38 pm. Then came the most beautiful moment of the past 35.4 weeks. Tyler announced to the world that he had arrived. He did so with the loudest cry we had ever heard. It echoed through the surgery room and back and forth through our ears like the most beautiful musical notes ever played. He weighed in at 6 lbs 10 3/4 oz and was 20.5" long. He did not immediately need any oxygen so Jason was able to hold him next to me for quite a long time.
Tyler was then taken to the special care nursery. He was put on room air oxygen through a nasal canula. He never needed to be intubated nor did he need any surfactant, even though the amnio showed that he did not have the natural surfactant needed to breathe on his own.
By Tuesday 90% of the fluid in Tyler's lungs was cleared up. He was given a bottle by the end of the day and had no problems feeding at all!
On Wednesday night they stopped his IV fluids because he was eating so well.
On Thursday his billi count was getting a little high so he was put under the lights. He was doing so well that he was able to stay in our room all day Thursday.
On Friday his counts were back down and he was able to come out from under the lights.
Every day we were visited by the neonatologist, at least once a day. He was very respectful to Jason and I. He never talked down to us, knowing how much we had already learned over the years, and cited studies and research to back his feelings on Tyler's care. All along his only concern was that Tyler lost weight (his lowest was 6 lbs 2 oz) and was having trouble putting
some back on.
On Thursday night the nurse weighed him and he had gained an ounce. The neonatologist was thrilled.
On Friday he gave us the good news that we could take Tyler home-the same day that I was
released! Paige cried and said "I can't believe Tyler is a take home baby." We all cried.
The 40 minute drive home was beautiful. The sun was shining and it was warm and comforting. Paige and Tyler both took a nap in the car and it was a very peaceful ride home. Jason and I kept looking at each other, without speaking, feeling like we were in a dream that neither one of us wanted to wake from! We could *feel* how much each other realized how lucky we were to have 2 beautiful children.
Sunday, April 20, 2008
New Tool for Doctors and Parents
4 key bits of information are entered (weight or estimated weight based on US, sex, gestation and whether or not the mother received steroids before birth) and then a chart is displayed with statistics showing survival rates and the percentage of those with mild to profound disabilities.
Directly from the NIH website...
"Every day, physicians and new parents must struggle with the type of care to provide to extremely low birth weight infants, the smallest, most frail category of preterm infants. These infants are born in the 22nd through the 25th week of pregnancy—far earlier than the 40 weeks of a full term pregnancy. Many die soon after birth, despite the best attempts to save them, including the most sophisticated newborn intensive care available. Some survive and reach adulthood, relatively unaffected. The rest will experience some degree of life long disability, ranging from minor hearing loss to blindness, to cerebral palsy, to profound intellectual disability.
The study authors referred to the issue of providing intensive care for extremely low birth weight infants. For example, physicians and family members may be reluctant to expose an infant to painful life support procedures if the infant is unlikely to survive. In such cases, they may opt for “comfort care,” which provides for an infant’s basic needs, but foregoes painful medical procedures. In deciding the kind of care to provide, specialists at intensive care facilities traditionally have relied heavily on an infant’s gestational age—the week of pregnancy a premature infant is born. Gestational age is known to play a large role in the infant’s survival. For this reason, in many facilities, intensive care is likely to be routinely given to infants born in the 25th week of pregnancy, whereas infants born in the 22nd week may be more likely to receive comfort care."
Although I am encouraged to see that parents will be given a choice and hopefully some useful information, I wonder how many docs are aware of this information or will even use it.
It is a start nonetheless.
Saturday, April 5, 2008
Vacation
I have received a few emails wondering why I have not commented. It would take too long to explain at this time, but in short, I am not in a place in my life that I can take a step back and be objective. Things have been on the rough side here and I am not able to sort out my thoughts or emotions. I have read every comment though and feel very thankful that most all have refrained from being less than polite. I honestly believe that we learn a lot about each other with each challenging topic.
On a another note... we are headed out of town to have some fun. Much deserved fun. Although I will have my laptop, I am going to try very hard to spend some time away from it.
Lastly, thank you to all who have continued to visit The Preemie Experiment. I've been somewhat absent but I assure you, I am not going anywhere. I still feel that together, with all of our various viewpoints, we can make the future brighter for the new crop of preemies being born each day.
I want to leave you all with a video that I found very interesting. Although not directly related to prematurity, I think Jill Bolte Tayler's experience will open some doors into the world of the human brain.
