Joseph Walker's Journey Overcoming Hirschsprung's Disease

Baby Joseph sitting at home in a beanie hat and a flannel outfit

I had a feeling I was pregnant and told my husband, said Alyssa. He said, 'No, you're not.' But I insisted, 'Yes, I am.' After missing her cycle and taking a pregnancy test, her intuition was confirmed.

During her pregnancy, her baby's ultrasounds were normal.

As far as we knew, our baby was going to be healthy, said Alyssa.

Due to their daughter having Turner Syndrome—a genetic disorder—Alyssa and her husband took extra precautions with this pregnancy by undergoing comprehensive genetic testing. About 10 to 12 weeks into the pregnancy, they did a blood test with a broader spectrum than standard genetic tests. The results did not reveal any issues, which reassured them.

The pregnancy proceeded normally until the 39-week mark when an ultrasound revealed that their baby, named Joseph, was growth-restricted due to inadequate nutrient supplies from the placenta.

At that point, the care team said, 'We are going to induce you today,' Alyssa shared.

Joseph was delivered at CHRISTUS Santa Rosa Hospital-Westover Hills, weighing 5 pounds and 15 ounces. Initially, he latched well and seemed to be eating properly. However, within the first 24 hours, he stopped eating, showed no signs of bowel movements, and his spit-up began to turn green. These symptoms alarmed Alyssa and Nathan, prompting immediate medical attention.

His care team ordered an X-ray, and it looked like his intestines were not in the right spot, said Alyssa. At first, we were under the impression that it could have been an obstruction of the intestines.

Joseph was transferred to the Neonatal Intensive Care Unit (NICU) at CHRISTUS Children's for further evaluation.

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An Unexpected Diagnosis of Hirschsprung’s disease

Two days after his transfer to CHRISTUS Children's, a rectal biopsy confirmed Joseph had Hirschsprung's disease. This diagnosis explained his inability to pass stool and the complications that followed.

Hirschsprung's disease is a congenital condition where nerve cells are missing from parts of the large intestine (colon), causing severe difficulty in passing stool. This leads to symptoms like a swollen belly, vomiting, and an inability to have bowel movements within the first 48 hours after birth. The condition can be genetic and often requires surgery to bypass or remove the affected part of the colon.

I usually handle situations like this well because my daughter has a genetic condition," said Alyssa. "I wasn't nervous at first. It was a moment of shock but also relief to finally have an answer. The emotions really hit me on the day of the surgery.

Surgery Day

Dr. Maria Pierce, a neonatologist who oversaw Joseph’s care in the NICU and Dr. Jonathan Greenfeld, a pediatric surgeon, were pivotal in Joseph's care. When Joseph was 7 days old, Dr. Greenfeld performed laparoscopic surgery to remove the affected sections of Joseph's colon and reattach the healthy parts.

During the surgery, we tested sections of Joseph's intestines in the operating room to see if they contained nerve cells, said Dr. Greenfeld. Once we identified sections with the necessary nerve cells, we performed a procedure called a pull-through. This involved accessing his intestines through the rectum and the abdominal area where we had made incisions. We then pulled the healthy intestine through the rectum and reattached it to restore normal bowel function.

Continuous updates were provided to Alyssa and Nathan during surgery, helping them stay informed and reassured throughout the procedure. Afterward, Joseph was returned to the NICU, where he recovered and gradually met his developmental milestones, including eating better and gaining weight. The NICU team focused on his nutrition and feeding plan, ensuring he received the necessary milk to support his growth and development. This helped Joseph thrive during his recovery.

Joseph's recovery was marked by significant progress. By June 20, 2024, he was discharged from the hospital. His appetite improved, and he began cluster feeding, eventually reaching a weight of 8 pounds.

I am so glad to see that Joseph’s surgery went well and so thankful to work with Joseph’s mom, added Dr. Greenfeld. Joseph’s mom is a thoughtful and fabulous advocate for her son’s care. It’s a wonderful example of physicians and families working together to provide the best possible care for our kids.

A Grateful Family

The Walker family with Alyssa and her husband, baby Joseph, and their two daughters.

Follow-up care for Joseph included regular check-ups with Dr. Greenfeld for rectal dilations, routine pediatric appointments, and developmental assessments to ensure he continues to meet his growth milestones.

Thankfully, Joseph is doing well, and there are no concerns about his progress.

Alyssa and Nathan are grateful for the care and support from the doctors and nurses at CHRISTUS Children's.

They were truly amazing, providing not just physical care but emotional support for our entire family, said Alyssa. They went above and beyond, even doing something special for my husband on Father's Day by giving him a heartfelt gift to celebrate his role as a dad.

Despite the challenges, Joseph is now thriving, displaying resilience and a strong will to overcome the challenges that life has presented him.

Learn more about CHRISTUS Children’s Neonatal Intensive Care Unit

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