Mia at Altmühlsee

Happy, Happy, Happy!

A family outing to a nearby lake despite a heart defect and airway stenosis? Completely normal for the two-year-old ventilation patient, mother Jenny and father Flo—a smoothly functioning team that can handle any situation.

“Da! da!” shouts Mia and points to a family of geese, honking and clucking on the way across the bike path, as Mia and her parents approach in their rickshaw. The sun is slowly sinking on the horizon behind the Altmühlsee in the Franconian lake district. The early summer day was hot, but now, early in the evening, the temperatures are more bearable. Many families are on the foot and bike path that meanders nearly 13 km around the lake, others are picnicking in the meadows. With a light breeze blowing, the weather is ideal for stand-up paddling. But the Surfcenter has rented out all the available SUPs.

"Since Mia came into our lives, nothing is the same as it was."
"But it wasn't as good as now. She really changed everything for the better."

At the Surfcenter on the east shore of the lake, the Knorr family rents a rickshaw to take them to the northern part of the lake. The Vogelinsel (birds’ island), a nature reserve, is located there. In addition to the ducks and geese, many rare bird species can be observed from the outlook tower. Alongside the path, butterflies and dragonflies flit and flutter.





Father Flo is back in Ornbau before breakfast. The small city in Franconia lies about 60 km southwest of Nuremberg. The location is perfect for families, with many destinations for nature outings in the immediate vicinity. Normally, Flo would be working on the renovation of the family home in Ornbau. After Mia’s birth, the Knorrs remodeled the apartment on the first floor of the multi-family house, adding on space for a new living room with open kitchen and Mia’s room. Now it’s time for the bathroom, then the electrical installations, a swimming pool in the garden—the work never ends.

But today, building the family nest has to wait. When Flo returned from the early shift, Mia happily squeaked “Baba, Baba”. The two took a little spin around the neighborhood in Mia’s electric auto while Jenny prepared everything for the trip to Altmühlsee. At the Surfcenter they climb into a rickshaw and are off! Flo pumps the pedals, Jenny holds Mia on her lap. The cool wind air stream is just right on such a hot summer day. A completely normal family outing, one would think as the Knorrs glide by, if it were not for just a few little things. . . .

"If that kid had a healthy heart, there'd really be no holding her back. I believe it was planned that her heart would be 'throttled' because even now she is unstoppable."

Flashback: The diagnosis came in the 21st week of pregnancy. Mia had a heart defect, one that’s typical for Trisomy 21. “I still remember how I sat in the room with the doctor after the diagnosis,” says Jenny, “and, after he had explained everything, he asked me for my gut feeling about an abortion. My heart cried out to me, ‘No! We won’t abort her, we’ll keep her!’ The decision was crystal clear.”

"When you look at her, you see how she is – fun-loving and a little bold."

Mia has a heart defect and airway stenosis. Where Mia’s trachea narrows, it has only 10 percent of a normal diameter. Just three weeks after her birth, Mia had her first emergency surgery on heart and lungs. At the beginning of her life, Mia had to be ventilated via cannula in her throat around the clock. Now, two years later, she is still dependent on cannulas and a ventilator. Mia, Jenny and Flo have achieved so much that Mia needs a ventilator only a couple of hours a day, mostly at night. Her lung muscles have grown so much stronger. After another two years, the narrowing in the trachea is to be surgically removed and Mia weaned from the cannulas and ventilator. Once that has been done, the heart defect will be resolved. “At six years of age, Mia will have survived it all,” says Jenny.

Back to the day of the outing and those “little things”. While Mia and Flo explore the neighborhood, Jenny gets everything ready for the trip to the Altmühlsee. What do they have to take along? For other parents of a two-year-old child, the diaper bag has to be packed with diapers, a change of clothing, drinks, food, wet wipes, pacifier, bandages, disinfectant.

Jenny packs those items along with all the medical equipment for Mia. At regular intervals Mia has to be connected to the suction pump to remove secretions from the cannula, nose and mouth. At 8 p.m. on the dot, Mia needs her medication. Will the outing last past that hour? Just in case, the medication has to be packed too. Of course LUISA can’t be left behind. Mia cannot go completely without the ventilator just yet. LUISA gives the Knorrs the secure feeling of being well prepared. “Actually, we can do everything with Mia,” says Jenny. “Because the ventilator and all the devices have become so handy, we can take Mia anywhere at all.”

"We really can do everything with her. Mostly because the ventilator and all the devices are now so handy that you can take them anywhere."
"When we go out and do our thing. . .we feel the fresh air. . . take a deep breath and relax."

That’s the way it is: diaper bag, suction pump and LUISA are packed into the rickshaw and the little adventure can begin. After arrival on the Vogelinsel, Mia has to be freed from secretions with the suction pump. Jenny and Flo know what to do. They put Mia on a wooden table at the edge of the woods and in a flash the procedure is done. “We know no other way. For us, it’s an everyday routine,” says Flo.

Now on foot, the Knorrs cover the small distance through the moor to the outlook tower with Mia riding on Flo’s shoulders and Jenny right behind them. When they reach the tower, the sunlight changes from yellow to orange. “Ah, you can take a deep breath and relax,” Jenny says with a contented sigh. The small, happy family enjoys the fresh air at the water’s edge, the enchanting atmosphere surrounded by nature. “People say ‘the main thing—healthy.’ That’s not most important,” says Jenny. “The main thing is that the child is happy and the family is happy!” There’s no doubt at all that the three of them are very happy together.

"She should just show that she's strong, which is what she does now."
"When Mia came home from the hospital, she was ventilated 24/7. Now she needs ventilation just a couple of hours at night."

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