Congenital Diaphragmatic Hernia – Our Family’s Journey

Congenital Diaphragmatic Hernia – Our Family’s Journey

Tuesday, October 10, 2017
Brian and I decided to create this blog as a way to centralize information about Baby Beres. We anticipate that the next few weeks of our lives are going to be very hectic and emotional. This truly feels like our first marathon as a family. My pregnancy had been smooth sailing with all signs pointing to a very healthy, normal baby on the way. However, my midwife was interested in me having one more ultrasound, just to ensure growth was on track.

While the ultrasound showed that the baby’s growth was just fine and all vitals appeared healthy, it also uncovered that our little person has what is known as a CDH – congenital diaphragmatic hernia. This is a rare birth defect that impacts 1 out of every 2,500 live births. Ultimately, the baby’s diaphragm didn’t finish developing, leaving a hole.

My mind was racing – what questions do you ask when you don’t even know what you are talking about? It was as if we were sitting in the last row of a school bus – we had no idea who was driving or where we were going. Our focus switched from assuming our current hospital was sufficient to ensuring we found the best facility with the best surgeon we could get in front of to give our child the best shot at a normal, healthy life. When I woke up on Friday morning, something in my gut was pulling me to Lurie Children’s here in Chicago.

Friday, October 12, 2017
As parents, we are going to miss out on so many incredible experiences that other parents likely take for granted…it feels like all three of us have pulled the short straw.

No matter how state-of-the-art the medicine, or how skilled a team we have access to, we are still terrified.

Wednesday, November 1, 2017
A big day. Kieran Patrick Beres was born. 6 lbs 13 oz and 19.2 inches long.

Thursday, November 2 – Days in NICU: 1
Within the course of 24 hours, my child had gone from safe and sound in my belly, to exposed and so vulnerable. I felt absolutely and completely helpless and I experienced a new kind of sadness… that of a parent.

Tuesday, November 7, 2017 – Days in NICU: 6
Dr. Aimen Shaaban is the man who saved my child’s life.  He is the doctor who led us to choose Lurie Children’s and we are so glad that we did.

Ultimately, Kieran was born with the hernia as diagnosed prior to birth that allowed the liver to infiltrate his chest cavity.  However, instead of just impeding the right lung from growing, the liver and the lung were actually fused and grew together as one mass.  This is a VERY rare condition and we were only able to find evidence of 14 other published cases in the world.  Unfortunately, it is also a condition with a very high mortality rate during the repair surgery.

This is the part where Dr. Shaaban becomes our ultimate angel – he was able to separate the lung from the liver, move the liver back into the belly and repair the hernia without a Gore-Tex patch.

Dr. Shaaban and his surgical team were strangers to us one month ago and yesterday they saved our child’s life – literally.  How do you even begin to thank someone for that?  I was at a loss for words beyond a small “thank you” between sobs.

Saturday, November 11 – Days in the NICU: 10
Unfortunately, Kieran’s right lung hasn’t decided to pep up… yet. The doctors believe that there are some major clots and gunk in there preventing the lung from inflating due to the surgical trauma of the lobectomy. If as of Monday the right lung hasn’t improved, the surgical team will perform a bronchoscopy. A bronchoscopy involves inserting a camera into your lungs for exploratory purposes and to remove said gunk.

Monday, November 13 – Days in the NICU: 12
We received word that a pulmonologist (lung doctor), assisted by her team, would execute the bronchoscopy bedside in Kieran’s room. As far as we understood it, this was going to be a very quick and easy procedure.

So now what was supposed to be a five minute quick in-and-out, was turning into an hour long or longer ordeal. This is a great example of how the hospital time continuum creates a scenario equivalent to emotional waterboarding for anxious parents.

Friday, November 17 – Days in the NICU: 16
It’s go time. The team was taking out his breathing tube today.

I wanted to see his little lips and hear his voice – watching my child cry but hearing no sound made me feel like my guts were being ripped out of me and there was virtually no way for me to console him or make him feel better.

We cautiously walked back into his room and we were greeted with tiny little kitten squeaks. The breathing tube had obviously wreaked some havoc on Kieran’s vocal chords, but I cried happy tears as his tiny voice was the most beautiful music to my ears.

Sunday, November 19 – Days in the NICU: 18
While his right lung has slightly digressed since taking out the breathing tube, his vitals are still good and we’ve been told that this is going to be a very slow process – it can sometimes just take time for him to catch up.

So now, we are in what Dr. Seuss describes in Oh! The Places You’ll Go... The Waiting Place. Kieran receives regular visits from respiratory therapy and we are working to keep him moving around to help get whatever junk may be lurking in that lung up and out.

Dr. Porta and baby Beres. 

Tuesday. November 28 – Days in the NICU: 27
Our little guy is getting bigger and stronger by the day.

We are reminded that so many families are challenged with health struggles daily but charge ahead with love and compassion. The kids we see at Lurie Children’s everyday are an inspiration and make us want to spread the same sentiment of courage and kindness. Be kind to each other.

Saturday, December 16 – Total Days in NICU: 43 Days at Home: 3
Over the previous six weeks, Brian and I had spent roughly 860 hours combined with these people. The NICU staff had become family; we were sad to say goodbye and they were sad to see us leave… Kieran had acquired quite the following. We owe them so much more than we can ever give them.

And now, it is like we are just normal, frazzled, tired new parents and it is blissful. It is almost as if it all never happened, like a dream.

I wouldn’t say that we love our son any more than other new parents, but we do have an earned appreciation for his strong cry that wakes us up at night, small coos as we change his diaper and just watching him breath as he naps.

 

Note: The above is a shortened version of this family’s journey, still in mom’s words. For the full blog, please visit Three Little Birds.

 

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