TwentyTwo Matters is an advocacy group committed to raising awareness, and providing support and hope to families facing extremely premature births.
Disclaimer: This is not medical or health advice. The information discussed here is for educational purposes. If you are facing an extremely premature birth, please seek the advice of medical professionals. Click Disclaimer to read my complete medical disclaimer.
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An Interview with TwentyTwo Matters
Most moms take for granted the full term pregnancy that they were blessed with. We complain about all that ails us during those long 9 months (or longer if you had a stubborn child like mine!). But did you know there are many women whose full terms were cut short? Almost in half even? And not only do they never get to say “I carried you for 9 months!” They usually say “I had to fight for your life!” Or they only get to say “goodbye”. Those stories are heart wrenching.
Today I am talking to my good friend Amy, co-founder of the advocacy group, TwentyTwo Matters.
What is the mission of TwentyTwo Matters?
We advocate for parents who are facing premature birth at 21-24 weeks gestation (periviable) or prior to 21 weeks gestation (previable).
Doctors and hospitals disagree on the definition of these terms and whether or not they are willing to provide medical intervention.
It is our goal to help parents find hospitals closest to them that have saved babies born as early as 21-22 weeks. We also give them example questions they can ask their doctors and how to request more information and/or transfers.
TwentyTwo weekers can survive and can thrive and should be given a chance to do so if the parents are requesting treatment.
22 weeks seems like an arbitrary number. Why is 22 weeks the determining gestational age in so many cases, to even attempt to save a baby?
By current medical standards, 21-22 weeks is the lower limit of babies being able to survive outside the womb. However most hospitals in the United States set their definition of viability somewhere between 23-24 weeks.
Lung development is a limiting factor because there has to be enough lung tissue for the baby to be intubated. The youngest living baby we know was born at 21 and 0. We believe that 22 weeks should be the new standard.
My friend, Kayla, had to fight for the lives of her twin girls. The name of our group was inspired by the birth of Kayla’s 22 week baby girls. If you want to read Kayla’s story, click here.
We support women at all stages, but are focused on moms who are having to fight for their baby to receive life-saving intervention.
Historically, there wasn’t much hope for babies born this premature. If you read any statistics and popular medical opinions, it is very disheartening and discouraging.
What medical advances have increased the chances of survival and why does it seem that some hospitals and doctors are so reluctant to change their standards?
If you Google “22 week survival rates”, the statistics include babies that weren’t given any intervention, which lowers the survival rates to 4-10%. You can click here to use Extremely Preterm Birth Outcomes Tool to see more specific statistics.
New steroid treatments can be given to mom while she is still pregnant and to the baby after birth. There are also new respiratory treatments for micropreemies and certain protocols for small baby units are becoming more standardized. These can help reduce the risk of skin break down, infection, etc.
Hospitals providing intervention are increasing the chances of survival of extremely premature babies. For example:
Dr. Edward Bell at the University of Iowa reports a 59% survival rate (new data may even show up to a 78% survival rate). Click here to read 15 Questinos You Should Ask About Neonatal Intensive Care Units.
The University of South Alabama in Mobile, which is only a Level 3 NICU (Level 4 having the highest neonatal care) reports a survival rate of 68%.
Some hospitals are newer or are just starting to provide such interventions, but as they continue to provide efforts, it is our hope that the statistics continue to increase.
What are the major medical concerns for 22 weekers?
One of the biggest concerns is lung maturity. The airway must be large enough to fit the tube to be intubated. A baby as small as 10 oz has been intubated with the smallest tube. But just like shoe size, a baby’s weight doesn’t always correlate with the size of their airway.
Micropreemies have fragile skin and underdeveloped organs. Because of this, they are more susceptible to infections. Necrotizing enterocolitis is a common but serious infection that can lead to bacteria leaking into the bloodstream. The patent ductus is an extra blood vessel that bypasses the lungs while the baby is in the womb, but closes up on its own within the first few days after birth. In some babies, patent ductus arteriosus (PDA) may occur when the blood vessel doesn’t close up on its own. Surgery may be required to manually close the hole if it is too large. Intraventricular Hemorrhage (IVH), or bleeding in the brain, is another risk.
Just as in a full term pregnancy, each birth is unique and each baby is different. The baby’s condition is weighed against the risks of treatments, but it is our belief that well-informed parents should be able to choose the level of intervention they desire.
We’ve teamed up to compile an informational toolkit filled with terms, definitions, questions, equipment, and resources that may be helpful for families facing extremely premature births. You can download the TwentyTwo Matters Toolkit here or click on the image below.
You have an interactive map on your social media sites that help women find hospitals that work to save these precious lives. How do you choose these hospitals?
Parents of a 21 or 22 weeker can fill out our confidential form HERE. Another way we will include a hospital is from a verifiable news article reporting a successful birth. The gestational age of the baby, month and year the birth occurred, and a link to a news article (if applicable) is included on the map.
If someone goes to the hospital that has saved in the past and the hospital refuses, then the parents of ones who were saved before are contacted and asked for permission to use their names and birth story as proof that the hospital has saved in the past. No personal information is ever shared without permission and no one is required to give such permission. The main post on our FaceBook page explains the process and has a link to the form.
You have several social media outlets to provide support for families. What are the account names and what kind of support do you offer through these outlets?
Our Facebook page is where most contacts come from. Messages can be sent on the message page or a direct message can be sent to the administrators, Amy Melissa Hyde and Kayla Marie Ibarra. There are several pinned posts that include general information and resources. The map/form on our Facebook page is a tool to help parents find hospitals that have saved extremely premature babies in the past. We actively seek out survival stories of 22 weekers to expand our map. *Just because a hospital has saved 22 weekers in the past, does not mean that they will again. Hospitals and individual doctors may have differing policies.
We also provide one-on-one help for women to advocate for their babies by sharing links to resources (We DO NOT provide medical advice but we do point families in the direction to find more information).
Everybody’s experience is different and telling one’s story can give others hope or comfort. Is there a place where families can share their stories?
Absolutely! We ask for families to send their stories directly to the admins. Please include the baby’s gestational age, weight, and length. They may include pictures at birth and any updates they want to share. Seeing the faces of survivors is powerful in giving hope.
There has been a recent Executive Order that the Department of Health and Human Services is protecting the lives of infants born prematurely or with disabilities. Can you explain this legislation?
The Executive Order on Protecting Vulnerable Newborn and Infant Children provides protection specifically to extremely premature babies and has punishments attached if the order is not followed. Hospitals can possibly lose their federal funding if they violate the order.
*Disclaimer: We do not provide any legal advice and only share resources for educational purposes.
How can people get involved and support your mission?
We encourage people to share posts or stories and spread the word. If you know anyone facing an extremely premature birth, please share our contact information with them.
Thank you Amy for sharing the mission of TwentyTwo Matters! If you have any questions or want to get involved, follow TwentyTwo Matters on Facebook, Twitter, or Instagram. If you know someone who may benefit from any of this information, please share this with them. Feel free to leave comments below, but for specific questions, please contact TwentyTwo Matters. Help us spread awareness and support for families facing extremely premature births and their babies!