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Emerson

HLHS, Hemi-Fontan


Emerson, Christmas 2002

Emerson was diagnosed in-utero at my routine 20 week ultrasound with Hypoplastic Left Heart Syndrome. We of course were devastated by the news that our baby had a CHD, but it was also a blessing in that it gave us time to educate ourselves and mentally prepare for his arrival. We decided to have him born at U. of Michigan and had all his fetal echos done there prior to his birth.

Emerson came into this world on January 18th, 2002. He had a few complications including seizures, hypertension, high fevers and apnea requiring him to be intubated all prior to his first open heart surgery! He was finally able to have the Norwood surgery done when he was 7 days old by Dr. Bove. He had a very hard recovery in which they had to go back in and replace his shunt and then he coded after surgery and they had to go back in yet a third time to control his bleeding. But Emerson wanted to see what this world was all about so he decided to stick around for awhile. He was discharged 2 weeks after the Norwood and we were so excited (and scared) to finally have him home. Our excitement was short lived as he was readmitted back to U of Mich. in serious congestive heart failure! His blood pressure was so high he required continuous IV medication just to keep him stable. He (and we) stayed at U of Mich. on the IV medication until he was old enough (12 weeks) to have the Hemi-Fontan procedure done. Emerson underwent the Hemi-Fontan in April by Dr. Bove. We finally came home 3 weeks later on continuous oxygen and a continuous tube feeding. He had a slow recovery after the Hemi, but at least we were home!!!

Emerson is now a thriving and active little boy. I still have to take him to Physical Therapy 3x week and Occupational Therapy 2x week for feeding issues, but other than that it is just everyday life with a one year old. He will be due for the Fontan this summer, not something either of us are mentally prepared for. We are just enjoying every precious moment we have with him and look forward to many more moments with him.

— Jill and Michael, Emerson's Parents (Royal Oak, Michigan)


This article was last updated on January 7, 2003

  • Born:  January 18, 2002
  • Diagnosis:  Hypoplastic Left Heart Syndrome (HLHS), gastro-esophageal reflux disease (GERD)
  • Treatment:  Norwood procedure, Hemi-Fontan procedure


 

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Disclaimer: Our members' stories represent their own perception of their experiences, and the medical information contained within has not been reviewed for accuracy prior to publication. Stories are presented for informational purposes only, and should not be substituted for professional advice. Always consult your (child's) physicians with your questions and concerns.
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