The most basic and powerful way to connect to another person is to listen. Just listen. Perhaps the most important thing we ever give each other is our attention... A loving silence often has far more power to heal and to connect than the most well-intentioned words. --Rachel Naomi Remen
Our families have told us people react to their situations of having a baby with congenital diaphragmatic hernia so differently. I often tell them that strangers become the best of friends and some family and friends become just strange. Sometimes people don't know what to say, how to help or say something unintentionally that isn't appropriate.
How can you help a family that is going through this - either just diagnosed in utero, in the NICU, who just became an angel or who is bringing home one of these special children?
(These are just a few - I am sure you all are creative and innovative enough to think of thousands of things to help.)
Listen to them - really hear what they are saying and you might find out what they need, Sometimes it is just a hug, perhaps a meal prepared for their family or doing a chore for them that might allow them time.
If they have other children, take the children to a playground, mall or something to do away from their family just to do something without the tension that is in their home. This is so valuable.
Send them a card, e-card - just state you care and are thinking or praying for them.
Help them send out birth announcements, run to the store for them and grocery shop or any other task that takes time or energy - offer to assist them!
Don't say you understand - until you have walked in their shoes - no one truly understands. I personally like, "I don't understand but I will try and I am here if you need me."
Remember their whole family is going through hell. There is no other word for it - when you are faced with these issues - it is hell on earth. We try to give HOPE and faith that they will survive this and thrive! They do - all say they will never be the same again and they learned more from these babies than a lifetime of learning!
Support any and all decisions they make for the care of their unborn, newly born, their new angel or baby at home. They know better than anyone how to take care of their child and their instincts are vitally important - and 99% of the time are absolutely the best for their child and their family.
Even one little thing to help - goes a LONG way - don't ever think it does not. Say a prayer or think of them - there is power in positive thinking and prayer.
This was originally researched, written and published in October 2007:
TODAY 5 BABIES WILL BE DIAGNOSED
Today almost 5 families in the United States alone will receive the devastating news that their unborn child will have to fight for its life. They have been diagnosed with a potentially fatal birth defect called a congenital diaphragmatic hernia. A congenital diaphragmatic hernia is where the diaphragm in development does not completely close in an unborn baby and organs migrate to the thorax which under normal circumstances is where the heart and developing lungs are located. This defect has a profound impact on lung function.Thirty-five (35) families a week.
One hundred thirty-three (133) families a month. 1800 families a year. Congenital diaphragmatic hernia occurs just as often as spina bifia and cystic fibrois yet most do not hear of it until their child is diagnosed.It doesn't just affect the baby, the mother and the father – it affects the whole family and the entire community. This baby will need Intensive Medical Care at a level three NICU with ECMO. The medical bills will total hundreds of thousands and quite often, millions of dollars. These are million dollar babies.
The care to save their lives depletes blood supplies at local blood banks – one infant required 6 gallons of blood and blood product in 38 days. Some families will be financially depleted due to the long term care of these children or other costs associated with one or both parents without a job. Without benefits, Medicaid takes over and covers costs. Some families require state and government assistance for short periods of time. This has an effect on communities. Some insurance companies have "Lifetime Caps" and these children reach them very quickly. These children require insurance to provide the therapy they need so that they can accelerate and thrive.
What can you do to help save these babies? What will help these families? What can you do to make a difference? 1. Learn about congenital diaphragmatic hernias. 2. Donate blood regularly, if you can, to your local blood centers to help ensure all patients receive the blood they need. 3. If you know a family affected by CDH, tell them of Breath of Hope –we are here if they need us. 4. If you are looking for a cause to help with – we would welcome your assistance! 5. Wear turquoise on March 31, 2009 for Congenital Diaphragmatic Hernia Awareness Day!
When someone asks what it's for – tell them!
written entirely by Elizabeth Doyle-Propst 10/24/2007
This article was just published today, it states the following:
Spina bifida affects 1 in every 1,500 babies each year while CDH occurs in 1 of every 2,500. In the U.S., $230 million each year is spent due to CDH4. According to the Centers for Disease Control (CDC), $636,000 is spent for each baby born with spina bifida during their lifetime5. This is only a small fraction of the costs associated with the various diseases children can be born with. If the possibilities for stem and gene therapy come to fruition as many scientists believe they will, these costs can be reduced for both the families affected as well as the government.
Today, almost 5 families will receive the devastating news that their unborn child will have to fight for its life. They have been diagnosed with a potentially fatal birth defect called a congenital diaphragmatic hernia. A congenital diaphragmatic hernia is where the diaphragm in development does not completely close in an unborn baby and organs migrate to the thorax which under normal circumstances is where the heart and developing lungs are located. This defect has a profound impact on lung function.
Thirty-five (35) families a week. One hundred thirty-three (133) families a month. 1800 families a year. Congenital diaphragmatic hernia occurs just as often as spina bifia and cystic fibrois yet most do not hear of it until their child is diagnosed.
The birth rate can be as high as 30/1000 to 15/1000 and the birth rate has fallen in the United States over this last year. World estimated birth rate is 19.97 for every 1000 people and this figure was taken from: http://www.indexmundi.com/world/birth_rate.html
Now, if there are 19/1000 - for this year that would equal to: 6,738,684 births estimated in the world.
Congenital Diaphragmatic Hernia has a rate of 1/2000 pregnancies and perhaps 1/2500 births due to miscarriage and heartbreaking interrupted pregnancies. World birth rate for CDH would be 2,695.47.
Now if you take the World Population to see how many people have been affected by CDH - this would be estimated at 1,347,736 people - this is at a rate of 1 in every 5000. They could be family, friends of family or the actual baby affected. We have been contacted by people who just discovered by reading our information that they were born with CDH or the baby they had in the 1960s died of CDH. They have been told hernia that affected the lungs and then gradually put it together reading our information.
So this means that there are over a million out there in this world that have been affected by Congenital Diaphragmatic Hernia. Where are you? We need your help to bring this birth defect to the forefront in medical research and awareness. We need national Awareness Days in each country. We need newly expecting parents to have heard of this birth defect before they have their ultrasound. We need more people educated on a birth defect that still has overall a 50% survival rate. We better care for the children affected so they can continue to be the pioneers who help health professionals not just maintain their health but it improve so they can go forward and make more aware.
Awareness brings Medical Research which in turn increases the survival rates. Prime example of this is Breast Cancer Awareness - from this early detection has increased survival rates. The same will happen for congenital diaphragmatic hernia.
"The truth is that our finest moments are most likely to occur when we are feeling deeply uncomfortable, unhappy, or unfulfilled. For it is only in such moments, propelled by our discomfort, that we are likely to step out of our ruts and start searching for different ways or truer answers." - Unknown
Our theory is that many people wait in lines and would read the back of the shirt while waiting and become aware of congenital diaphragmatic hernia.
There are also several other new items available on our Zazzle Store which has a link at the bottom of this blog.
Please be sure to Goodsearch and Goodshop to Zazzle and a percentage of the sale will go to our Goodsearch for Research program - 100% of all funds raised through Goodsearch will go to Congenital Diaphragmatic Hernia Medical Research.
One Hundred Tenth Congress of the United States of America AT THE HOUSE OF REPRESENTATIVES September 24, 2008Referred to the Committee
SECOND SESSION Begun and held at the City of Washington on Energy and Commerce AN ACT
Thursday, the third day of January, two thousand and eight
To amend the Public Health Service Act to increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions. Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE. This Act may be cited as the ‘Prenatally and Postnatally Diagnosed Conditions Awareness Act’.
SEC. 2. PURPOSES. It is the purpose of this Act to-- (1) increase patient referrals to providers of key support services for women who have received a positive diagnosis for Down syndrome, or other prenatally or postnatally diagnosed conditions, as well as to provide up-to-date information on the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes; (2) strengthen existing networks of support through the Centers for Disease Control and Prevention, the Health Resources and Services Administration, and other patient and provider outreach programs; and (3) ensure that patients receive up-to-date, evidence-based information about the accuracy of the test.
SEC. 3. AMENDMENT TO THE PUBLIC HEALTH SERVICE ACT. Part P of title III of the Public Health Service Act (42 U.S.C. 280g et seq.) is amended by adding at the end the following: ‘SEC. 399R. SUPPORT FOR PATIENTS RECEIVING A POSITIVE DIAGNOSIS OF DOWN SYNDROME OR OTHER PRENATALLY OR POSTNATALLY DIAGNOSED CONDITIONS. (a) Definitions- In this section: (1) DOWN SYNDROME- The term ‘Down syndrome’ refers to a chromosomal disorder caused by an error in cell division that results in the presence of an extra whole or partial copy of chromosome 21. (2) HEALTH CARE PROVIDER- The term ‘health care provider’ means any person or entity required by State or Federal law or regulation to be licensed, registered, or certified to provide health care services, and who is so licensed, registered, or certified. (3) POSTNATALLY DIAGNOSED CONDITION- The term ‘postnatally diagnosed condition’ means any health condition identified during the 12-month period beginning at birth. (4) PRENATALLY DIAGNOSED CONDITION- The term ‘prenatally diagnosed condition’ means any fetal health condition identified by prenatal genetic testing or prenatal screening procedures. (5) PRENATAL TEST- The term ‘prenatal test’ means diagnostic or screening tests offered to pregnant women seeking routine prenatal care that are administered on a required or recommended basis by a health care provider based on medical history, family background, ethnic background, previous test results, or other risk factors. (b) Information and Support Services-
(1) IN GENERAL- The Secretary, acting through the Director of the National Institutes of Health, the Director of the Centers for Disease Control and Prevention, or the Administrator of the Health Resources and Services Administration, may authorize and oversee certain activities, including the awarding of grants, contracts or cooperative agreements to eligible entities, to-- (A) collect, synthesize, and disseminate current evidence-based information relating to Down syndrome or other prenatally or postnatally diagnosed conditions; and (B) coordinate the provision of, and access to, new or existing supportive services for patients receiving a positive diagnosis for Down syndrome or other prenatally or postnatally diagnosed conditions, including-- (i) the establishment of a resource telephone hotline accessible to patients receiving a positive test result or to the parents of newly diagnosed infants with Down syndrome and other diagnosed conditions; (ii) the expansion and further development of the National Dissemination Center for Children with Disabilities, so that such Center can more effectively conduct outreach to new and expecting parents and provide them with up-to-date information on the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes; (iii) the expansion and further development of national and local peer-support programs, so that such programs can more effectively serve women who receive a positive diagnosis for Down syndrome or other prenatal conditions or parents of infants with a postnatally diagnosed condition; (iv) the establishment of a national registry, or network of local registries, of families willing to adopt newborns with Down syndrome or other prenatally or postnatally diagnosed conditions, and links to adoption agencies willing to place babies with Down syndrome or other prenatally or postnatally diagnosed conditions, with families willing to adopt; and (v) the establishment of awareness and education programs for health care providers who provide, interpret, or inform parents of the results of prenatal tests for Down syndrome or other prenatally or postnatally diagnosed conditions, to patients, consistent with the purpose described in section 2(b)(1) of the Prenatally and Postnatally Diagnosed Conditions Awareness Act. (2) ELIGIBLE ENTITY- In this subsection, the term ‘eligible entity’ means-- (A) a State or a political subdivision of a State; (B) a consortium of 2 or more States or political subdivisions of States; (C) a territory; (D) a health facility or program operated by or pursuant to a contract with or grant from the Indian Health Service; or (E) any other entity with appropriate expertise in prenatally and postnatally diagnosed conditions (including nationally recognized disability groups), as determined by the Secretary. (3) DISTRIBUTION- In distributing funds under this subsection, the Secretary shall place an emphasis on funding partnerships between health care professional groups and disability advocacy organizations. (c) Provision of Information to Providers- (1) IN GENERAL- A grantee under this section shall make available to health care providers of parents who receive a prenatal or postnatal diagnosis the following: (A) Up-to-date, evidence-based, written information concerning the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes. (B) Contact information regarding support services, including information hotlines specific to Down syndrome or other prenatally or postnatally diagnosed conditions, resource centers or clearinghouses, national and local peer support groups, and other education and support programs as described in subsection (b)(2). (2) INFORMATIONAL REQUIREMENTS- Information provided under this subsection shall be-- (A) culturally and linguistically appropriate as needed by women receiving a positive prenatal diagnosis or the family of infants receiving a postnatal diagnosis; and (B) approved by the Secretary. (d) Report- Not later than 2 years after the date of enactment of this section, the Government Accountability Office shall submit a report to Congress concerning the effectiveness of current healthcare and family support programs serving as resources for the families of children with disabilities.’. Passed the Senate September 23 (legislative day, September 17), 2008. Attest: NANCY ERICKSON,SecretarySpeaker of the House of Representatives.
Vice President of the United States and President of the Senate.