Getting Answers: 2013 Research Project- Data Summary

Getting Answers: 2013 Research Project

Coping With Laryngomalacia, Inc.

a 501 (c ) 3 nonprofit organization.

CopingWithLM.org

CopingWithLM@yahoo.com

Introduction

At the start of the new year, CWL launched its first worldwide research project. The project consisted of two separate surveys (one regarding the child and one regarding the pregnancy of the child). 

The surveys were open to all LM, T M, BM families, around the world. 112 people from 34 US states, Canada, Sweden, France, Scotland, Australia, Liverpool, Norwich, England and Ireland all participated in the surveys. Participants had the choice to “skip” all questions and for some questions, could choose more than one response. No one was compensated for their time or responses. All responses were anonymous to CWL.

The Results

Part 1: The Pregnancy

1.The top 3 states/countries with LM, T M, BM mothers and children were:

• California, USA
• New York, USA
• Canada

2. Age at which the mother conceived the LM, T M, BM child:

39% said 25-30 years old

3. Prescription medication use during the pregnancy:

Out of 80 responses, an overwhelming 55 said yes they took medication while pregnant.

The most used medication was an antibiotic followed by an antidepressant.

4. Family history of LM, T M or BM:

88% said there was no family history.

5. Use of hair dye during the pregnancy:

55% said yes, they did use hair dye during the pregnancy.

6. Prenatal vitamin use during pregnancy:

90% said yes, they took their prenatal vitamin during the pregnancy.

7. Did the mother suffer from severe morning sickness (hyperemesis gravidarum):

88% said no, they did not suffer from HG.

8. Participants were asked to rate their pregnancy:

53% said they would rate their pregnancy as low risk.

9. Chemical and environmental contaminant exposure during pregnancy:

48% said they were exposed to smoke followed by 28% said  flu and 26% said mold.

10. Weeks gestation  the baby was born at:

63% said 39-41 weeks (full term).

Part 2: The Child

1.The top 3 states/countries with LM, T M, BM mothers and children were:

• California, USA
• New York, USA
• Canada

2. Gender of baby:

71% said boy.

3. Age at which the baby started showing symptoms:

48% said symptoms were present at birth followed by 39% said within the first two weeks after birth. All participants noted symptoms.

4. Age at diagnosis:

79% said at 0-3 months followed by 16% said at 3-6 months.

5. When diagnosed, what category was the LM, T M , BM:

please note, parents of mild cases usually do not seek out support/education so they would not be aware of this survey.

53% said moderate followed by 33% said severe (needing surgery).

6.Need for reflux medication:

88% said yes, their child needed reflux medication.

7. In addition to LM, TM and BM, other diagnosis the child has:

please note, participants were allowed to choose more than one response.

The top 3 are:

• 78% Gastro: reflux, ulcers, chronic swelling of the airway
• 52% Feeding Problems: Failure to Thrive, need for feeding tube or feeding therapy.
• 29% Other

8. Age the child needed surgery:

80% said within the first 6 months of life.

9. The need for more than one surgery (supraglottoplasty):

73% said no, there was no need for a second surgery.

10.  Stridor improvement:

42% said the stridor improved after surgery followed by 36% said once reflux (GERD) was under control.

Conclusion

After reading the combined data from each survey it is apparent no family history is needed to have a child with either defect, medication use during pregnancy may suggest a link to all three defects and most of the babies are born at full term. Babies seem to all show symptoms at birth or within the first two weeks of life. The survey suggests LM, TM, BM affects more boys than girls and many moderate-severe babies require the use of prescription reflux medication. If the baby requires surgery, it is usually performed within the first six months of life and it is very rare a second supraglottoplasty is needed.The actual number of severe babies to mild babies is still unknown since many parents of mild babies do not seek out support.