Leila’s Journey With CDH

Today I would like to tell you a little about my daughter’s journey with CDH and the support from the Incredibly Teddy Foundation. After years of trying to conceive my 2nd child, with several miscarriages and 2 rounds of IVF, I received the amazing news that I was pregnant with Leila.

I couldn’t have been more happier until on 11/17/14, I was notified that Leila had a condition called CDH. My heart literally broke. They said most likely she wouldn’t survive birth and if she did she would have to be put on ECMO. Leila had a very severe case of right sided CDH, she had no visible right lung and about 10% of her left lung.

The birth and the months to follow were heartbreaking. She would start to do well and then have another issue, such as left sided bronchial malacia. So every time they tried to extubate her, her lungs would collapse. She had no choice but to have a trach and a vent and at the same time a GJ feeding tube.

Leila had her ups and downs, but after 6 months of being in the hospital she finally was released on 08/13/15. Life was as beautiful as it gets having both my girls home until the morning of 09/09/15, when the day nurse negligently turned Leila’s oximeter off to give her a bath and as she moved her, she did not drain the water from the vent tubing and Leila aspirated and collapsed and went into cardiac arrest. The nurse froze and I did everything I could to save Leila’s life. She was without oxygen for 10 minutes and suffered severe brain damage.

On 09/11/15, the doctor’s recommended we remove Leila’s life support. I refused, and told them to get her stable enough to go back home where she belongs. Leila was discharged again on 11/17/15. The first several months were brutal, trying to provide the new cares that Leila would need to help with a set of new diagnoses.

Given all this, I lost my job. I had previously been the bread winner, so losing my income took a large burden on us financially. We knew we couldn’t afford to continue to live in our home, so we came together with my mother and bought a house together so that I could be Leila’s primary caregiver and ease the burden on us financially. After not even a year, my mother had collapsed and had a heart attack and died. She was paying the mortgage and most of the housing bills. Not only had we suffered all the emotional losses, we now suffered financial losses.

Leila was also having increased seizures and GI issues and was hospitalized again. I had picked up a side job doing bookkeeping to help make ends meet. But with the extra hospitalizations, I was unable to work.

That is when I was contacted by the Incredible Teddy Foundation. After suffering so many emotional losses, the last thing a family needs is the financial burden as well. The ITF eased that burden and assisted us with financially so we could get caught up on the mortgage and several other financial losses our family endured. They were amazing and a life saver to our family!!! The process was so easy and there was very little turnaround time.

I can’t thank the ITF for there help during one of the most difficult times in my life! They helped us get on my feet financially and focus on what is really important, loving and caring for my daughters.

Thank you Incredible Teddy Foundation!!! We are beyond thankful to have such a wonderful organization helping families in financial need, during such heartbreaking times.

Very best,

Toula Porter