Snowflakes of CDH

Every CDH story is different just like a snowflake but yet we are all a family supporting one another through this very difficult journey. Meet some of our Pennsylvania Snowflakes of CDH.
If you would like your Snowflake added, please email

Nathaniel Cummings

With a history of multiple miscarriages and complications, Jessica was surprised that her pregnancy with Nathaniel was textbook perfect until his left- sided CDH was discovered at her 18 week ultrasound.  Nathaniel’s stomach, intestines,  and liver were already in his chest,  pushing his heart to the right and severely limiting his lung growth. Nathaniel had very little lung growth and was given a lung to head ration of 0.2, giving him a less than 20 % chance at survival.  Jessica decided that she wanted to give Nathaniel the best possible chance, and traveled to both UCSF in San Francisco, CA and Brown University in Providence, RI to discuss Fetal Tracheal Occlusion. Jessica choose to have the surgery In RI but the day before surgery, an ultrasound showed that Nathaniel’s lungs had grown and he was no longer a candidate for the tracheal occlusion.
Nathaniel was born at 39 weeks in Pittsburgh at Magee Women’s Hospital  September 1, 2011 and sent immediately to Children’s Hospital of Pittsburgh, down the street. Nathaniel went immediately onto ECMO, and had very few problems during his 23 day run. He went through one circuit change, and a slight brain bleed after birth, but no other complications. Nathaniel did very well with his lung recruitment, but had very severe pulmonary hypertension that he could not overcome. He survived for 26 hours after being removed from ECMO. Nathaniel never had his hernia repair surgery. Initially it had been discussed a week after birth, however, his lung recruitment started improving so the doctors decided it was safest to wait until Nathaniel was off of ECMO and more stable.

Brylie Rose Gregory

This is Brylie Rose Gregory. I found out she was a CDH baby when I was about 18 weeks along. We found out she was a girl and then they told us that there was something wrong and kind of explained what was going on. We made an appt the next week and started our journey every two weeks down to Pittsburgh. I went into labor with her at 36 weeks and was rushed down to West Penn and she was delivered the next day. She was then transported to children's where she has a rocky start and was put on ECMO. I got to see her day three and fell in love with her even more. She had good and bad days and sadly went to be with the Lord ten days after she was born. August 11-21, 2013. I miss her everyday and do what I can to spread awareness in memory of her. 

Liam McCue

Liam was born on January 12th, 2012 at The Children's Hospital of Philadelphia. He was on ECMO for 9 days and had his Left CDH repair surgery on day 14 with a gortex patch. Liam's stay in the NICU was prolonged due to his PDA not closing, so he had to have a Cardiac Catherterization done as well as he got bacterial pneumonia. He was released from the NICU on day 75 with a NG feeding tube and 6 medications.  Currently, he no longer has a feeding tube and he is on 2 medications as needed.  He continues to struggle to gain weight and he is currently working with a speech therapist to help with some speaking delays.

Bryson Woodruff

Bryson was born on July 30th, 2012 at The Children's Hospital of Philadelphia. He was on ECMO for 21 days and had his CDH repair surgery on day 32 with a patch. Mommy got to hold her little man for the first time on day 35 and he was released from the NICU on day 90 with only a feeding tube and a few medications.  Currently, he has no feeding tube and only on 1 medication but does have some issues with delays and gaining weight. 

No comments:

Post a Comment

Note: Only a member of this blog may post a comment.