CDHi’s Featured CDH Patient of The Week: Ayra Raut

CDH International’s featured CDH patient of the week is survivor Ayra Raut. Ayra is the daughter of  Sonam and Abhimanyu. Sonam had this to share about their strong and determined little girl:

“The overwhelming joy of our 20th week ultrasound soon turned into worry when the doctor told us about our baby’s CDH. It was the first time we had heard about it and it was all very tough to comprehend. We were desperate to find some information/stories that could help us know more and that’s when we found CDH International. 

The ultrasounds/MRI showed that our baby had her bowels and stomach in her chest cavity and that her LH ratio was favourable resulting in a good prognosis. That being said, there was still so much uncertainty around what to expect once she was born.

Our pregnancy was closely monitored by MFM wth regular checkups to track baby’s progress.

I was lucky to carry her full term and I got induced on 40+1 weeks. Ayra was born on Jan 19th 2021, was immediately intubated without the opportunity for golden hour and had her LCDH repair surgery at 2 days old. 

Although her surgery was not complicated, she developed a pulmonary hemorrhage the same day which made her situation really critical. She was given clotting medicines to stop the bleed and was kept under close monitoring for a couple of days. Before the surgery, she was on conventional ventilator support, but after, she needed jet ventilation and iNO. Over the course of 20 days after surgery, she recovered from a pulmonary hemorrhage, multiple lung collapses, she slowly graduated from jet to conventional to CPAP to breathing room air and was simultaneously weaned off medicines and extensive sedation. 

As for her feeds; while on ventilation, she was on TPN and the doctors slowly introduced breast milk, we did give her OIT doses from day one which she loved. Once she started breathing on her own, we got help from OTs/LCs to get her started on oral feeds. Although she didn’t take to breastfeeding very well (still struggling with that) she slowly became comfortable with bottle feeding.

We brought her home on 24th of February while still on sildenafil for hypertension and omeprazole for acid reflux. She currently feeds on breastmilk and we supplement it with Enfamil A+ which works well for her tummy.

She is doing well at home, loves to dance with her dad and enjoys her time with her Nana(grandfather) who loves carrying her on the pillow.

I am really thankful to CDH International as this has been my go-to place for information, comfort and hope since day one on our journey.”

If you are interested in becoming CDH International’s next featured CDH patient, please visit https://cdhi.org/feature-your-cdh-patient/ for more information.

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