Thomas Kramer

First post: 10/11/2017 Latest post: 11/2/2017
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Thomas was born with severe aorta coarctation (almost aorta arch interruption) and Tetralogy of Fallot and had many complications after surgeries. He is a miracle baby and is known as a miracle by the medical staff at Mott Children's UofM Hospital. He stayed in the hospital for approximately 100 days (3 1/2 months).

Thomas is known as 1 of 5 medically documented known cases in the world being born alive with these combination heart problems and getting attempted surgery to save the life. It is an very extreme rare condition because it is a complex condition that is NOT viable for life making it unheard of being born alive. The doctors say it is a true miracle for Thomas to be born alive and really don't understand medically how it was possible. Thomas is the only documented survivor, having received the first successful surgery, because of God and all the prayers, he was born at the time of technology, and the doctors and nurses at Mott Childrens UofM Hospital. He is a miracle child. :)

He has a medical journal printed about him that you can see at -
http://www.springerlink.com/content/k71hv621pm08h672/fulltext.html

The medical journal's title is: Successful Staged Neonatal Repair of Tetralogy of Fallot with Long-Segment Hypoplasia of the Aorta

Thomas was born with severe coarctation of the aorta (aorta had a part that was 4 cm long the size of a thread causing blood flow interruption to rest of body) and Tetralogy of Fallot (4 parts wrong with heart), holes in the heart with pulmonary valve problems causing oxygen and non-oxygen blood to mix. He also does not have a right side carotid artery to the brain nor a right arm artery. He has had 3 open heart surgeries: first at 3 days old, the second surgery at 2 1/2 weeks later and the 3rd on June 8th, 2009.

He has had complications, some severe and life threatening, after each surgery but HAS OVERCOME them:

1. a compromised vocal cord because the nerve was wrapped around his aorta and the doctor had to move it, he had no cry or voice sound for months

2. his diaphragm nerve compromised during his heart surgery so he has a diaphragm plication (left side diaphragm tied down)because the left diaphragm is paralyzed,

3. he had severe congested heart failure,

4. he had heart block (top of heart doesn't "talk" to bottom part of heart),and JET, another complication with it and had to be sedated laying on a cooling pad that was set to about 93 degrees so his body function slowed down to heal his heart

5. he was on a pacemaker,

6. he got severely bacteria septic in his blood and lungs for 2 weeks starting 2 days after his 3rd open heart surgery (thank God the infection did not go to his heart and reconstructed aorta and stick to his heart patch or aorta patch), and had bacteria pneumonia and the infection stuck to his ventalator tube and all his central lines.

7. his platelet count fell to 6000 while septic a week after open heart surgery and stayed low for about 2 weeks (thank God he didn't bleed out right after a major surgery),

8. he had to have multiple and multiple blood transfusions,

9. he got severe hydrocephalus (blocked fluid in the brain ventricles which causes the brain to be compressed - his brain was compressed thin and and pushed down to his brainstem) which is controlled with a VP brain shunt (this is a lifetime issue with no cure and he will always have a brain shunt), He developed hydrocephalus after his 3rd open heart surgery - something from surgery caused it.

10. he got subdural bleeding around the brain after his brain shunt surgery which caused seizures - once so severe while we were on vacation that he had to be flown back to UofM Mott Hospital by helicopter,

11. he got a blood clot in each upper groin area where his central lines went in and bacteria blood infection stuck to them,

12. he got narcotic dependent from his hospital pain and anxiety meds from the surgerys and had to be weaned off them for months and had to go through drug withdrawals symptoms

13. he had GERD causing him to throw up his food and not drink by a bottle,

14. he had to be nasalgastric (NG) tube fed for 10 1/2 months and didn't drink on his own until he was 10 1/2 months old,

15. he was on a ventilator for 8 weeks because his lungs were dependent on it and he had to wean off extremely slow,

16. he got a deep chest tissue positive bacteria culture after his second open heart surgery and was put on antibiotics and thanks to God it didn't develop/spread into a bad infection which is most of the time deadly (the culture is taken before his chest was closed up 5 days after his open heart surgery)

17. Thomas was on 16 medications coming home from the hospital. He started out with 32 doses of medications around the clock and we were able to wean off slowly over many months. We weaned off the last medications in November 2010. Plus had pulse ox machine, oxygen, IVs, blood thinner shots at home.

18. On November 22, 2010 Thomas was diagnosed by cardiac MRI with a narrowed, small Inferior Vena Cava with little to none blood flow going through it. It was caused by a blood clot. His body recreated a collateral vein bypass.

19. Thomas got his first glasses for lazy eye and crossing eyes on July 12, 2011. He also has small optic abnormal optic nerves.  He was diagnosed with optic torsion in January of 2017.

20.  Thomas started seizures again August 2016.  We don't know why he has started seizures but it is being controlled by seizure medication.

21.  Thomas started venous disease October 2016 due to partial and total occlused chronic deep vein blood clots from his heart surgeries.  He has to wear compression stockings now for the rest of his life.

He was hospitalized in October 2009 with a severe case of swine H1N1 Influenza A flu which caused respiratory distress and he was hospitalized over Christmas 2009 with bronchiolitis. He now has ear tubes because of multiple earaches.

He is amazing! He is so special to us! He is a miracle for all to celebrate and a gift from God that we treasure! We praise God!









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