Penny is my 3 year-old daughter with Down Syndrome and she can't take meals with her mouth.
How can she even be alive? I'll explain how, but first I shall tell you how we've got in such unreal situation.
Penny had to go through big stress since she was born premature, just 29 weeks of pregnancy, in 2016. She's been always the smallest everywhere, but always brave and strong in spirit. This sorryful disadvantage of being born early set her at a breathing machine from day one to almost her first month alive. Imagine a tube on your throat for such a long time. Lungs can have amazing stress by medical oxigen. Marks of the tube inside her mouth can even be seen today, almost 4 years after.
My little girl was able to put up with every adversity of being a premature after 5 months, but still had to undergo six hospitalizations, 3 catheterisms, one pulmonary artery banding surgery and one open heart surgery at age 2.
After her heart surgery she went through critical conditions throughout 60 days she had to stay in Intensive Care, with a 7 weeks long intubation, infections, a cardiac arrest, atelectasis, lung hypertension and quick soft tissue deterioration making her to bleed from toung and lips.
As consequence she has a traqueostomy and is dependent on oxigen, but the most unexpected sequel was disfagy. She simply can't perform the complex muscular mechanism to swallow.
She used to have liquified diet before the surgery, but after going out of the hospital she won't eat anymore nor by bottle nor spoon or glass. I can't think of a more frustrating situation for any parent, at least I was terrified.
Nevertheless we found some help. Deglution therapy has helped her have food by spoon again, but she still can't swallow.
Take physical configuration of tong and mouth because Down Syndrome, and ad the number of times she had to be intubated to the breathing machine. I think we have tons of explanations, but few easy solutions.
She went into one more surgery for a gastrostomy, which has helped her win some more weight with the help of a nutrition advisor.
We've found out talk-tools is probably the most suitable therapy for Penny's rare case of disfagy. She's got progress accepting stimulation inside the mouth by vibrations. Special spoons and glasses are useful too, but not enough after the first year of work.
One thing a parent has to understand when having a child with Down syndrome is to be patient and wait for the right moment for your kid to make every single progress.
Therapist get frustrated to. We'll begin to work with a new specialist after signs of helplessness of her first deglution therapy.
In complex cases like this, there's need to go through several other therapy plans, such as congnitive, phisycal and social.
We've seen that kids can live with a gastrostomy for many years before succeding in eating properly. Gastrostomy products in Mexico are scarce and expensive. There are other expenses like curation materials for oxigen therapy, tracheostomy and gastrostomy care.
I'm so glad there is hope to kids like her to get specialized help in our era. I'm sure cases like this were impossible to handle properly years before the overall understanding we can find today of what Down Syndrome and its complications are.
I hope this words can be of any help. If you find yoursel in a similar situation, don't hesitate to comment on your own experience.