Mia was born in June of 2009. When she was born, everything seemed normal. She seemed like a healthy girl. In September of 2009, everything changed. She was refusing to eat, she was starting to turn pale, and her breathing was deep. We took her to an emergency room, where they told us that it was just bronchitis and for us to go back home and she would be fine; but seeing her so bad, we decided to take her to another hospital. There, they told us that she was really doing very badly and they had to transfer her to a children’s hospital so that they could run the necessary tests on her. And, so, they urgently transported her in helicopter—we would arrive later with the greatest desperation that a parent can feel toward their child. We didn’t know what was going on.
We arrived at the hospital where we were faced with the news that Mia’s heart was not well. She had dilated cardiomyopathy and her condition was so critical that the only hope was a heart transplant. It was the most difficult news for us to hear as parents—only a miracle could save her. From there, they decided to transfer her again to another hospital specializing in transplants in children. There, she was put on the waiting list. She was in such a delicate state that in order to stay alive, she would perhaps need an artificial heart, a Berlin heart.
The months, the days, the hours, and the minutes were eternal. The faith, hope, and love toward our little girl were our strength. Every day was another piece of hope. Just when we thought that all was lost for our little girl, the miracle took place, the Angel we were hoping for arrived. On November 15, 2009, she received her heart thank God. I will never stop giving thanks for that blessing in our lives. Thanks to God, thanks to the parents that God illuminated so that their little one could become a superhero because every smile, every glance reflects that little Angel, may God shower them with blessings. During these past six years, we have watched Mia, the warrior, grow. Having her by our side is a blessing. She is a happy girl. She loves to dance and jump around. She’s unstoppable. She is sweet, and, of course, very mischievous. We give thanks to God for every day that He allows us to see her smile.
Unfortunately, the transplant comes with a lot of medical care that she must receive for the rest of her life, continuous medical check-ups, and risks. Regrettably, one of those risks presented itself in September of 2015. Extra palpitations were detected in her heart. She immediately had a catheterization to find out what was going on. Her arteries were nearly blocked. And the greatest risk was a cardiac arrest. So, they decided to hospitalize her immediately. Everything about her was normal; she didn’t have any type of symptoms. But that’s how it is with this disease: sometimes there are symptoms and on other occasions the first symptom is the cardiac arrest. For the doctors, the only option was another transplant when they saw how advanced her problem was. Once again, she was placed on the waiting list. We, as parents, were once more overcome with anguish.
Despite everything, with her smile and desire to live, she always infected us with her joy and lessened the anguish and strength and hope. Ten months went by. Fortunately, she always remained strong, stable, and as always, with a smile. On January 28, 2016, while I was trying to finish this little story about Mia’s life, I couldn’t find an ending because the future seemed uncertain, her doctor came in and told me that they had a perfect heart for Mia. I didn’t know whether to cry, whether to laugh, or to scream. It’s a difficult emotion to explain because you have so many emotions: joy, sadness, hope, fear. We placed everything in God’s hands.
On January 29, the transplant was performed on her. Everything has been so fast, her surgery was so fast. Her recovery has been a miracle in how surprising it is to see how strong she is. It is really wonderful. I don’t know how to thank God for so much love for us, and the parents of the donors—may God bless them forever. Just as with the first transplant, we will forever honor them and keep them in our prayers.
Barely 12 days since her transplant, upon seeing how well her recovery was going, her catheterization perfect, her biopsy perfect, her doctors decided to discharge her. Incredible!!
Mia is a warrior, a little angel on Earth.
She gives LIFE. She gives LOVE.
“Nicholas Lindblad was born on July 25, 2001. Two days later he was diagnosed with Hypoplastic left heart syndrome. A congenital heart disease that is characterized by the underdevelopment of the chambers on the left side of the heart. At 8 days old, Nicholas had the Norwood, the first of 3 shunts put in. At 6 months old he had the Glen, the second shunt and at 2 ½ years he had the Fontan the final shunt. These 3 shunts rerouted the blood flow so the only side of his heart used was the right side. At 3 years old he had to have his aortic arch replaced. Just 6 months later he was back on the operating table for a Tri Cuspid Valve repair. A year later the valve had to be replaced with a Bovine Valve. Three years later he had the valve replaced again with another Bovine valve.
At the age of 13, Nicholas started going through the process of more tests in order to determine the best approach for his ongoing serious medical condition. It was discovered through a series of testes that Nicholas also had a tumor on his upper spine that would need to be removed, and that he would not be stable enough for the surgery until after he received his transplant. On May 18, 2015, Nicholas was admitted into the CCU and placed on the transplant list as a level 1A. On July 2, 2015, the tumor on his spine shifted and his legs gave out. He developed severe pain and lost the ability to stand.
Eventually Nicholas received his heart transplant on August 3, 2015 after being on the transplant list for 77 days.
My husband and I needed to pack up our everyday essentials and move into the hospital with our son. I had to shut down my seamstress business which I have run out of our home. The loss of this income added extra stress onto our already overstressed lives. My husband continued to work 2 jobs 7 days a week. If we had other young children at home this would have been impossible for us to do.
Until now, we have not been able to find a charitable foundation that helps families like ours with their non-medical day to day living expenses.
When your child is in advanced heart failure fighting for their life, your number one priority is and should be them. When a child must endure a lengthy hospital stay, the most important thing is having his or her family with them. Ireland’s Hope can help make that possible.”
Tyler experienced post-transplant complications and sadly he passed away on December 8, 2015. Tyler will continue to be a Legacy Child for Ireland’s Hope.
Tyler SchnackyIreland’s Hope Legacy Child
Tyler was born on June 14, 2000. Just twenty eight hours after he was born we found out we were parents to a CHD baby. He was born with Hypoplastic Left Heart Syndrome. Tyler had 4 open heart surgeries before the age of three years of age and over a dozen and a half heart catch surgeries from birth to today.
Tyler has also developed P.L.E. (Protein Losing Enteropathy) after his last open heart surgery. In April of 2014, we found a large blood clot in his lower left chamber of his heart and his P.L.E. had returned with many more complications.
His heart was failing due to his P.L.E. He still had a large blood clot in his heart. He also had been diagnosed with a Pituitary Gland problem (which resulted from the steroids used for his P.L.E.) and osteoporosis from the protein loss. His body had been taking protein from his bones. He ended having two broken bones in his spine as a result of improper protein levels. His hip also showed major calcium loss. Tyler’s immune system started failing him from the P.L.E. and his oxygen levels dropped in the mid 80’s causing him to feel sick every day.
Tyler had been put on the heart transplant list in July of 2015 as a Status 2. Tyler got a IV port put into his heart in August to help his heart failure and P.L.E. loss until his new heart arrived. The medication he was receiving through the IV was called Milrinone and when that medicine is given at a high dose, it qualified Tyler to be listed as a 1A on the National Transplant List.
Tyler was listed on October 7th 2015 at Children’s Hospital of Milwaukee on a Status 1A (Top of the list, up to a 3500 mile radius).
On November 24th Tyler received his angel heart. Tyler experienced post-transplant complications and sadly he passed away on December 8, 2015.
If you are not already an organ donor-we strongly encourage to become one today and share your decision with the people you love.
This was only made possible through the selfless and precious gift of organ donation. On one families darkest day they made the most thoughtful decision…to help other children live on. We thank you dearly for that choice and hold your family up in prayer. Your child lives on in others!!
Ava’s story begins on November 20, 2013 when we found out we were pregnant with baby #2. We were so excited to have her enter into our lives and bring joy to our family. We began to build our lives around the growth of our new family including moving our family from the City back to the suburbs. We had great visions of our new family life in the burbs with great dreams for our girls.
At our 20 week ultrasound, February 26th, 2014, we were told that Ava had a rare congenital heart defect called Hypoplastic Left Heart Syndrome.
Further testing throughout our pregnancy would reveal that she had other congenital heart defects called coarctation of the aorta, ventricular septal defects, and Shone’s syndrome. We were educated about our options, those being to terminate our pregnancy or accept the risks associated with bringing Ava into this world.
This decision required no thought as we vowed to do whatever it takes to fight for her life. We cried ourselves to sleep each night and woke up to tears each morning for the first 2 weeks. We were devastated. Our lives had instantly turned upside down.
At week three we gained the strength to accept this life challenge and to embrace it. We changed our life’s focus to doing whatever was needed to support Ava and her cause. We postponed our move back to the suburbs and rented a tiny one bedroom apartment 2 blocks from the hospital. We were all in with this decision to stand by Ava and do whatever was necessary to support her.
Ava was born on July 16th 2014, it was such a joyful moment to meet this little girl that we had been so worried about and so anxious to meet. She was beautiful!!!! Ava was immediately transported to Ann and Robert H. Lurie Children’s Hospital where she would begin her journey. At 7 days old, July 23rd, 2014, Ava had her first open heart surgery to repair her aorta and place a band around her pulmonary artery (PA) to help restrict flow into her lungs from the right side of her heart. She had what is called a coarctation of her aorta, which means a narrowing or pinching off of the aorta. She recovered in a week, and we were home by the time she was two weeks old on July 30th, 2014. We were so excited and hopeful. At home now, Ava had an NG tube to help her eat for two weeks and we were able to remove it because she was thriving. We were so happy!!!
At 7 months old, Ava was back in the hospital for her second open heart surgery. The MRI imaging taken in December of 2014 showed that her left ventricle was on the border line of being able to provide enough support for thriving and life so the team made the decision to go with a two ventricle repair of her hypo plastic condition. So the decision was made to close her ventricular septal defects and take down the PA band that was placed back in July. This was a much more difficult surgery and recovery, she spent 6 weeks in the hospital recovering. Ava came home to us again and this time recovery provided a much greater struggle for our little girl. While Ava was trying so hard to be a normal little girl she was prevented that opportunity due to her condition. We spent the next 3 1/2 months needing countless amounts of medication, her constant sickness including vomiting every half hour and the constant worry of whether or not she would make it through each night. This was by far the most difficult challenge we had ever faced and at times we questioned whether or not we could make it through it all.
Ava started to progress, her health began to thrive even through there were still many struggles. In April 2015 we fulfilled our dream of moving our family back to the suburbs to start our new life. We were very hopeful of Ava’s recovery and the doctor’s ability to save her little heart. Ava thrived at times and had many setbacks over the next couple of months. She was still a very sick little girl. On August 18th Ava’s little heart could not take anymore and it started to go into heart failure. She was rushed to the hospital where she declined quickly over the next 12 hours requiring intubation. It was at this time that we were told that there was nothing more they could do to try to save her heart. Once again we were devastated!
We had some much hope that our little girl’s heart was going to be repaired only to have to start all over again with so many uncertainties. On August 25th, 2015 Ava was placed on the heart transplant list status 1A. She is our little fighter and proves to us everyday that she’s still in this. She’s been in the hospital now over 100 days…paraflu, central line infection, and now pneumonia…she just keeps fighting…waiting for her gift of life from an angel. We know she will get her chance, but for now we just support her in any and every way we can. We’re so thankful for another day, and HOPE to have a tomorrow.