Kailey's Story

I would like to share a very special story with you. This is the story of Kailey Rose. This beautiful, little girl will fill you with such incredible hope and promise...after all she is a living miracle. Kailey Rose will make you believe...

This is Kailey's Story...

Kailey's Story was written by her Mom, Michelle

November 18,2002 could not arrive fast enough. It was the day we were going to find out the sex of our second child via sonogram. As I laid on the table, bladder full.. my husband sat in a chair next to me holding our 9-month-old son Kevin. Immediately the technician seemed to have an issue with my husband and son being in the room. She asked them to leave. She scanned me and never once engaged in conversation. She then told me I could sit up, but to be prepared to be scanned again, this time by the radiologist. I knew in my heart something I was terribly wrong.

That evening we went home with no word on our sonogram, not even Congratulations. We didn't know the gender of the baby, but we did know that there was more that they were not telling us. I called my OB as soon as we walked in the door. Twenty minutes later, she called back with some "news".

That night, we were told that our baby had multiple defects. The following day we were told that it was more then likely she was a trisomy 13 baby. Most of the doctors we saw were telling us we should go for a late term abortion. They told us that with the heart defects, the baby would never sustain life. They told us that she would most likely be still born.

When the amnio came back normal, they told us that if she were born alive she would suffer. They said that she would probably never take a breath, and if she did, she would be a shell of a baby. They quickly passed us on to a new set of doctors, because they felt that the risks were to high for them to continue to see me through my pregnancy, they were against carrying to term.

When Kailey was born, she was never expected to live. Kailey's spine was exposed from S1-S5, with the muscles above the Spina Bifida affected as well. Her heart had a hole in between the bottom ventricles (VSD), her aorta was on the right side, rather then the left (double outlet Right ventricle), and her mitral valve was extremely deformed and not passing the blood well (mitral valve stenosis). She was born with a cleft lip & palate as well as Chiari malformation & hydrocephalus.

We were told to expect a 4-POUND BABY. Instead we had a short 17 inch long chubby who was 6lbs 10oz. She was born crying and pink. This was a miracle in and of itself.

That night, the doctors sat us down with a cardio thoracic surgeon, and the neurosurgeon. At the time, Kailey was in congestive Heart failure. Because her aorta was on the right side of her heart, she had too much blood pumping to her lungs, and not enough pumping to her body. She was on a vent, and feeding tubes. She had so many Iv's and wires, that there hardly a place to touch her. Her heart was so bad at that point that surgery for the Spina Bifida was impossible. The neurosurgeon had very little to say. Just that once, she is stable, he can operate, but if she doesn't become stable she would most likely contact meningitis. The Cardio Thoracic surgeon had worse news for us. He told us that Kailey's valve was shaped more like a triangle then an oval, and that it didn't really flap open to allow blood to flow. Instead the blood was on a very slow drip. The only option he could offer was a heart lung transplant. He also said not to get our hopes up, since hearts and lungs are very rare to be donated together, especially to a child with so many disabilities. He explained that if Kailey had had a hypo plastic left heart, they could bypass the left side, and allow the right side to do all of the work. But since she was so unstable that was not an option either. Beside, he felt she would then be a cardiac cripple. He explained that a mitral valve replacement was an option only for older children and adults. By the end of that conversation, we signed a DNR, and had Kailey baptized. We spent a few hours saying hello and goodbye. We believed with all of our heart that it was the last time we would see her alive.

At about 6:30 AM on Valentines Day, a team of doctors came storming into my room. We assumed the baby had died. When the neurosurgeon said that she was all prepped and in pre-op, and he needed a signature.. I had no idea what he was talking about. He was in a rush, and I did not comprehend what was happening. The Neonatologist carefully explained that while there was no explanation for this sudden change, Kailey's heart was functioning perfectly! She was stable enough for the surgery on the spine. Hours later, we were told it was the most uneventful surgery ever, and she did great. The neurosurgeon was near tears when he said to me, "I need you to know that your child is a miracle".

From that day forward, Kailey faced many battles, but has overcome every single one, with grace and strength.

Kailey's biggest problems in the NICU were numerous. She was on and off a vent numerous times. She succeeded in ripping it out, and had to be kept in a medical coma quite often. She hated tubes, and ripped out Iv's and feeding tubes, oxygen vents and umbilical lines. She would throw herself into what the doctors referred to "episodes" when she would be reinitiated. Her heart rate would rise, her oxygen sat would go down, and she would lean toward CHF (congestive heart failure). She had a few bouts with a collapsed lung, and also with being septic (which occurred by unsanitary practices. For example, a nurse washing her hands poorly before suctioning or drawing blood).

With in 79 days of life, Kailey had the surgery for Spina Bifida, a band placed on her pulmonary artery (to decrease flow of blood to the lungs), a VP shunt, open heart surgery to replace her valve with a mechanical valve, close the hole in her heart, and put her aorta on the left side. Along with some other small procedures like cardiac Caths, and MRIs.

The doctor who said Kailey's heart was pretty much hopeless, has never been seen again. A wonderful doctor who saw hope in her, offered to do an extremely controversial procedure, by placing an adult sized mechanical valve in her little heart. It was placed on a diagonal angle, and has been working like a charm!

Through out the 79 days that Kailey was in the NICU, the cleft team never saw her. Genetics never talked to us either. Every time we asked about it, we were brushed off with talk of there being more pressing issues.

Once home, we were able to take control of the situation. Kailey had her lip repaired on September 12, 2003 by Dr. Douglas of the North Shore University Cleft palate team in NY. She will have her palate repaired by him as well on January 31,2004. We are currently waiting for the results of some genetic testing that has been done. The genetics team feels that Kailey has a rare genetic condition called Hay-Wells Syndrome. It is a form of Ectodermal Dysplacia.

Kailey is currently a happy vibrant 10 month old. She is saying Mama. Kailey loves to play peek a boo and So BIG. She shows no signs of brain damage, and even shows to be advanced in her cognitive skills.

Please Keep Kailey in your thoughts and prayers. We never know what tomorrow will bring, but we are celebrating every day we have with her. She is a miracle and an angel on earth.

Please keep Kailey in your thoughts and prayers. Pray that she stays healthy and strong. Remember to believe, hope, and most important-have faith...

For more information on Kailey please visit:

http://www.kaileyrose.com

Kailey Now!!

If you would like to send your prayers and letters to Kailey's Parents, just click on the link below.

TO KAILEY