Kayla Marie Rahe

Kayla’s Story

Born April 14th, 2008

My family spent many weeks reading through the stories on this website when we discovered during a 30 week ultrasound, that our daughter had the rare malformation, the Vein of Galen. The Dr’s and Specialists after an MRI and Echo Cardiogram, all presented to us very gravely and realistically admitted the prognosis for this was not good. We were introduced to the Fetal Care Center at Children’s Hospital where they supported us and scheduled all the meetings with specialists so that we had an idea of what to expect going forward.

Kayla was born April 14th by caesarean at 8:04am. A 5lbs 6oz, 19 and ¼ inches long jewel, and the most beautiful music to our ears was her crying which told us she was breathing! My husband, Sean and I got to kiss her, but 5 or more Dr’s, Pediatricians and Neonatal Specialists, whisked her out of the delivery room and within an hour we learned that Kayla did have to be intubated due to her struggling heart function and breathing.

I recovered at Good Samaritan Hospital in Cincinnati , while Sean stayed with Kayla during her transport to the Cincinnati Children’s Hospital Medical Center in Cincinnati, Ohio . She was admitted to the RCNIC (Regional Center for Newborn Intensive Care) and hooked up to the ventilator and other machines there and seemed to be doing well until the 2nd day after delivery, when, they told us, her ‘reserves’ of blood cells and blood count, blood pressure, etc. from before delivery, were wearing out and she was having to maintain the increased output of blood through this enlarged vein malformation which was putting more stress on her heart. The day I was released from the hospital, the nurse and staff at Children’s took the time to find a way to let us hold Kayla, tubes and all, because the next day she would be going through her first embolization procedure with an Interventional Radiologist Surgeon from Cincinnati’s University hospital, Dr Todd Abruzzo, a procedure with many risks, especially with a newborn, so they wanted us to have the chance to hold her.

Kayla’s 3rd day of life and she went through a 6 hour surgery/procedure which consisted of gaining access to the vein through a leg artery, and with the use of ultrasound guidance made way through her arterial system to coil and glue the veins in an effort to decrease blood flow and relieve her heart. The procedure was completed with no technical difficulties and Dr Abruzzo and his team were able to close off 15-20% of the vein.

She remained stable but did not improve, so the recommendation was to try it again. At a week of life she went through her 2nd surgery/procedure. They could not gain access through her leg artery this time, since there is risk of it closing off after using it once, which it did, so they had to use her umbilical line. An even riskier path as it is not a straight shot. But again, the procedure was successful and Kayla remained stable and strong the entire time, giving them no troubles. They were able to close off 50% of the vein this time.

4 days later, after she still was not improving enough, they decided to go back in a 3rd time, using the umbilical line again, where a shunt/tube was still inserted for other care procedures and could remain safely in for at least 10 days after birth. This surgery also went technically well but Kayla’s blood oxygen levels became unstable so they had to stop early and told us it also was more difficult to give a percentage of vein blockages anymore as the vein was looking more massive once they got deeper into it. That evening we were told by her nurse that she opened her eyes a little for the first time!

Yet, her heart and blood oxygen levels were still not improving. Plus as a result of all these procedures, Kayla was becoming more bloated due to all the fluids they have to insert: a dye to help them guide the needle through the arterial system and anesthesia. And while they kept telling us some bloatedness helps the heart, if it gets too much it could also cause her to go into heart failure. So by the 4th procedure which they decided needed to be done, they were even more concerned than usual because of the fluid buildup and her anemia and more yellow skin color, indicative of heart troubles. However, the 4th procedure also went well and Dr Abruzzo was able to shutoff 2 more major arteries.

Since her stats were not improving right after the surgeries, which the cardiologists said should occur if enough of the vein was blocked, the Surgeons said they needed to get more aggressive and go in through the venous system instead of the arterial system to block more of the vein. Which they did and at the end of Kayla’s 5th, 6 hour surgery (9 hours with the time it took to gain access to the vein), Dr Abruzzo confidently reported that he got 95-98% of the vein blocked off and no further intervention would be necessary until she was older, 6 months, as they prefer to wait until then normally.

During this entire experience, we’ve had to go home in the evenings to be with our 1 and ½ year old son, so we would call into the hospital before bed and this time we were told she was improving and all her stats looked great. And then we woke up the next day… As of 4am her stats had gone back down again and we were told by the neonatal medical fellow on staff, Dr Tara Lange, that Kayla was perplexing them, so they did another MRI where they discovered that Kayla had experienced a cerebral hemorrhage and there was a great amount of pressure on her brain (looking at the mri’s the left side of her brain was shifted to the right). We were told that we would have a severely handicapped child if she survived, but that the Neurosurgeons may have another suggestion, which they did, to attempt to drain the blood and see if the brain would reform and improve with less pressure. So Kayla courageously survived a 6th surgery. By this time we were not surprised at how strong and agreeable she remained during and following the surgeries, everyone who cared for her commented about how easy she was to get along with. Each time we see the surgeons serious face and hear their realistic words and all the things that could go wrong, and each time thankfully, there have been no technical difficulties and Kayla never gave them a hard time, except maybe the once when she became unstable.

However, Kayla never came back since the hemorrhage. Following her birth, we could detect little movements when we’d touch her feet or hold her hand, or she’d squirm a little, her eyes would flutter, I saw her squint them open once or twice and she’d even yawn adorably. But since the hemorrhage, she would just twitch. She was not bloated anymore though and she still looked healthy, except for all the tubes and non-responsiveness. On Thursday May 8th we were told that Kayla’s EEG results showed very little brain activity. There was nothing more that could be done and they advised us to think about taking Kayla off the life support and let her go peacefully.

They did not rush us to make the decision right away and we wanted a few more days to see what happened when they took her off all her sedation medicine. She never woke up even when that was discontinued. We got to hold her again that day and subsequent days. We’d read to her and sing to her and hold her hand, snuggle with her and kiss her and tell her all we’d show her and do with her when she came home so she wouldn’t miss a thing. We even got to give her a bubble bath. Mother’s Day was May 12th and even though our son is under 2 years old and not normally allowed in the NICU, they had given us a private room and made an exception to let him visit her. Our immediate family came too and we all took turns holding our precious Kayla.

Monday May 12th we had a small Christening Ceremony in her room and a professional photographer with a non-profit organization came to take pictures for us. We held Kayla most of the day. The next day May 13th, we took her off the ventilator at 12:20pm. She passed away about an hour later in our arms, peacefully sleeping, our Angel in Heaven now.

I never imagined after reading all the stories that this would be how ours would turn out. We held on to so much hope. Especially during the entire month how strong Kayla remained and how miraculously she fought. She touched so many lives in her short life for which we will be forever grateful.

We pray that she will live on in the hearts of all of those who were touched by her sweetness and strength and as so many of the other special children with this rare malformation do even when they pass away, they live on through their courage and grace and unique experiences.

We could not have asked for a better center to care so respectfully for our daughter as Children’s Hospital in Cincinnati . They put together a care package for us with memorabilia from her life there, footprints on a craft stone, handprints, locks of hair and throughout the month the nurses made scrapbook pages of her which we added to the scrapbook we put together for her Memorial Service. The nurses took care of Kayla lovingly in our absence and while other centers may not have gone to the lengths that they did in attempting to treat her, thanks to them, we were blessed with receiving 4 weeks of getting to know Kayla and it gave her a chance to show the world how strong she and all babies can be, against the odds

We remained strong for Kayla and Thanks to the prayers from numerous family, friends and community support systems, we were able to make it through this tragedy. Even now, we can feel the prayers and know that Kayla is at peace with God. A baby we will be able to hold in heaven, just as we held a piece of heaven down here when we held her. We can draw from her strength until we are reunited with her.

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About vogadmin

Vein of Galen UK is a website dedicated to families and sufferers of Vein of Galen malformation all over the world. We provide information and support for families affected by this condition.
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