The Mayo Clinic states Hirschsprung's (pronounced HIRSH-sproongz) disease is a condition present at birth as a result of missing nerve cells in the muscles of the baby's colon which causes problems with passing stool. Every baby born with Hirschsprung’s requires surgical treatment and each has unique needs, so the lives of their families are always changing.
Happy moments and joys of life are matched with doctor visits, hospital stays, and medical tests. It’s hard to imagine everything these kids to go through but we’re happy they’re here and so proud of them — just like their moms.
1. Caleb Balling
"Our son Caleb was diagnosed with Hirschsprung's at 4 days old. At 7 days old he had a pull-through procedure to remove a portion of his colon that was not functioning. Since then he's been on an up and down roller coaster enduring countless ER visits, multiple surgeries, and many hospital stays, but he keeps a smile on his face through all the tough times."
— Crystal Casey-Balling
2. Jameus Lynn
"At 2 days old, Jameus was diagnosed with Hirschsprung's disease. At exactly 2 weeks old, he had his first surgery. A couple days after surgery his bowel perforated. He went back into surgery and came out with a colostomy. He was 3 weeks old and on life support. My now thriving son would not be here without his colostomy. It gave him life when he was so close to it being taken away. He is absolutely my hero."
— Dallas Lynn
3. Hudson Demick
"Hudson did not pass stool within the first two days of birth. After doctors did a full rectal biopsy, he was diagnosed with total colonic Hirschsprung’s disease. At just two weeks old, ileostomy surgery was needed to bypass the affected part of his colon. My precious baby, when I look at him I see strength and determination. He is my brave warrior!"
— Bridgett Demick
4. Faith Hamilton
"Faith did not gain weight like she was supposed to. She would spit up after eating and rarely pooped. My mommy alarm went off! Faith wasn’t diagnosed with total colonic Hirschsprung’s disease until 2 1/2 months old and then had to have ileostomy surgery. One lesson I’ve learned through Faith's journey is that you MUST advocate for your child. You are their voice. If it doesn’t seem right, then keep fighting until you get answers."
— Keina Hamilton
5. Levi Levingston
"My son Levi was born with Hirschsprung's disease. He was airlifted to the children's hospital at two days old and had ileostomy surgery at four days old. As a single mom, the financial part of his illness has been really difficult. A revision last November resulted in a recessed stoma and reoccurring abscess, so I’m raising funds to take him to children’s hospital in Memphis for a second opinion. Levi has been through a lot but is surrounded by love. He has four older sisters who spoil him rotten!"
— Amanda Watson
6. Everett Burford
"Many babies with HD are unable to pass meconium but that isn’t always the case. My son Everett passed meconium but was having explosive bowel movements, horrible smelling gas and excessive spit-up. At two months old, he was diagnosed with Hirschsprung’s and had major surgery when he was three months old to remove over seven inches of his colon. Dr. De La Torre performed an innovative, minimally invasive surgical procedure in one surgery versus needing multiple operations. We just can't thank him enough. Today, Everett is thriving thanks to the on-going care he receives from Children’s Hospital of Pittsburgh.
— April Burford
In case you missed it, last year Stefania Little from Australia created a global month of recognition for Hirschsprung’s disease awareness. She also has an online support network Facebook page to help families feel more connected.