Haydn's Story - Congenital Diaphragmatic Hernia (CDH)

Bravery, strength and courage: these are the words that persistently come to mind when I talk about and think about Haydn. Haydn is our second son - his brother Maxwell is two and a half years older.

Haydn was born at 28 weeks. Only one day after I went into preterm labor, I was placed on bed rest in the hospital. After he was born, the doctors and nurses shared their excitement that we had made it to 28 weeks, and from the initial assessment, all was well because he was breathing on his own. Filled with relief, my husband and I called our family and friends as we remained in the labor and delivery room to share the wonderful news. But then everything changed. About an hour later, we were visited by Dr. Shetty, the NICU doctor, and Dr. Nicksa, the pediatric surgeon. They began to explain to us that Hadyn had a congenital diagrammatic hernia and would need a repair. They further explained that given his age, the chances of his survival were only 50%. As I attempted to understand everything that was shared with me, I had no words. My heart was racing, and all I could do was cry once everything finally settled in.

The weeks following were a whirlwind. Haydn had his surgery seven days after birth and remained in the NICU for 61 days. He was on a ventilator for weeks and we could not hold him for more than three weeks. Despite the stress and constant anxiety we experienced each day, there was a sense of calm and reassurance that every NICU doctor and nurse gave us. The passion and care the entire team provided us is something I am forever indebted to them for. As weeks went by, Haydn continued to fight. He slowly weaned himself off of the breathing supports, and one by one, his medication tree became more sparse. He began to drink breast milk while he was still intubated and eventually learned to breastfeed. Haydn began to gain weight more rapidly, and as he progressed, talks of him coming home became more real.

On July 7, 2016, Haydn was discharged from the NICU after 61 days. It was truly one of our happiest days as we could finally join our family under one roof in the comfort of our own home. He had a second hernia repair around his second birthday and has continued to need daily nebulizer and inhaler treatments, but this has just become our normal life. We are just so thankful that he is here with us today. Since then, Haydn has grown to be a curious, happy, loving and assertive little boy. He has a great passion for trains and loves singing and dancing to show tunes such as The Greatest Showman.

Hadyn is truly our little hero. In the midst of all of the ups and downs that we have had, Haydn has proven to us time and time again that he is resilient and continues to beat the odds.

Update:

Haydn is now 6 years old. He's a bright light, full of energy and living his best life. Since his second hernia surgery at two years old,  he has been healing well and his doctors are thrilled to see that his left lung had expanded and grown beautifully over the years. Haydn was diagnosed with high-functioning autism when he was four, and with the help of his amazing school team and ABA, Haydn is becoming more and more independent. He loves sharing his love for trains with the world and will be starting first grade soon. 

From being born at 28 weeks and staying in the NICU for 61 days to fully thriving in life. We are so proud of this kid!