Little Hearts

Cora - born 2009

At 22 weeks, after being referred for a Level II ultrasound, we learned that our baby had Hypoplastic Left Heart Syndrome. The perinatologist delivering the news painted a terribly grim picture, and despite the numerous specialists we would see for ongoing care in the ensuing months, it was a terribly stressful time.
 
That said, I was induced at 39 weeks and gave birth to a beautiful baby girl, our third, who arrived weighing 6 pounds, 3 ounces, and measuring 20 inches long. She looked so great at birth, with APGARs of 8 and 9, that I got to hold her and cuddle her before she was taken to Boston Children's Hospital as planned.
 
Cora's specific presentation, Mitral Stenosis and Aortic Atresia, required a catheterization procedure in order to determine whether or not she was a candidate for the Stage I Norwood Procedure. On Friday, December 4th, not even two days old, she underwent a cath procedure that deemed her ready for surgery; we met our surgeon at 9am and by 1:30 pm he had successfully performed the Norwood Procedure. Cora did beautifully at each stage of her recovery, was breastfeeding at one week old while still in the CICU, and was released in time to celebrate her two week birthday at home.

We returned to Children's Hospital Boston in April for Cora's second surgery. The doctors were able to schedule her pre-Glenn catheterization and surgery for the same hospitalization which was very convenient. In the cath lab, our cardiologist was able to address the narrowing in the aortic arch through balloon angioplasty, and two days later Cora went to the OR for a bidirectional Glenn and tricuspid valvuloplasty; the latter procedure all but eradicated a moderate to severe amount of tricuspid valve regurgitation that was but a trace in her post-op echo.

Cora spent two nights in the CICU where she was able to take oral feeds almost immediately upon walking from sedation (about 30 hours post-op); we were then released to the floor for four additional nights of recuperation. Just six days after major open heart surgery, a smiling, cooing and energetic four month old was released from the hospital. Truly amazing.

UPDATE MARCH 2012

Our biggest struggle between surgeries has been feeding and weight gain; after agonizing for over a year to get Cora to the target weight of ten kilos (we never did meet that goal), Cora underwent a lateral tunnel fenestrated Fontan on January 9, 2012--just a month after turning two years old.  Our hospitalization was 17 days, due in large part to the fenestration closing in the immediate post-operative period.  As was the case prior to fenestrated Fontan surgeries, her chest tubes continued to drain large volumes and she ultimately went back the cath lab on post-op day 9 to have the fenestration re-opened and stented.  Her recovery from there was remarkable. 

Now, a scant two months after having been discharged, she is back to all her favorite things:  climbing, swinging, bouncing on the trampoline, going to playgroup, reading, snuggling with Mom and Dad, trashing her sisters' bedrooms while they are at school, watching Elmo, listening to Bruce Springsteen, and forever sitting on the potty.  While life is certainly not stress free, and while she continues to struggle with GI issues, the toughest stuff is behind us.  Three open-heart surgeries in 25 months, remarkable.

Story by Cora's Mom, Hannah - Massachusetts

3/8/2012
Chelliney, born 1995
« previous
5/18/2012
Thomas, born 2009
next »

 
Mask
Become a Member Arrow
  • No cost to join
  • Access to support services
  • Connect with other parents
Share your Stories of Hope Arrow

Have a baby that is newly diagnosed with a CHD? Read our stories of HOPE from other people just like you.

Little Hearts, Inc.

P.O. Box 171, Cromwell, CT 06416
Phone/Fax (860) 635.0006  Toll Free 866.435.Hope
SecurityMetrics for PCI Compliance, QSA, IDS, Penetration Testing, Forensics, and Vulnerability Assessment Web Solutions Connecticut CT Web Design & Development Company