Miraculous Mamas Raising Congenital Heart Defect Awareness

Babes and Babies


Everybody. I Have Miraculous Mama here. Courtney's taller and she is going to share are with us. The story of her daughter who was born with a congenital heart defects and we just wanted to spread some awareness this month and she volunteered to come on and share their stories. So thank you so much for coming. On Courtney Hi thank you for having me yeah. Of course I'm just GonNa let you kind of take over and and share your story okay. I guess I'll just start from the beginning Tie It all ties in together so it will make sense. My daughter was born with cleft lip and cleft palate and she was born with Iu Gr which is where. Just the baby doesn't grow very well inside of you so she was really Small Small and the clip and cleft palate was what they thought had made her small inside of me Well then she was Born everything was fine but with cleft lip and cleft palate. They're not able to eat as much at Mulvaney or I should say like like a normal baby so they have special feeders that they may be choose on the bottle instead of sucking and so they burn more calories that way so uh-huh Kinley was a growing normally. She was really tiny really not around three months old. I had started noticing that her feet were turning really blue and then they would get really read like as if the blood would gets her feet. Really fast I took her to the doctor doctor and they said it was completely fine. It was just because she was really tiny. Didn't have a lot of fat on her body. They just thought it was. Her being cold is enormously on only happen when she was naked So they brushed it off while one day on a Monday. Something told me to take her to the doctor. I don't remember what what it was but I took her to the doctor. They didn't find anything wrong with her. She was completely fine and then Wednesday rolls around and something inside of me told me to take her to the doctor. I didn't know what it was in. During this time. She had really bad reflux so sh- with Chewing on the bottle should puke Schuch all the time And I'm not talking about like little baby setups. I mean excessive vomiting And so they started her own medication nation. While in this particular Wednesday. I took her in and I don't remember what four I just remember that. Something told me to take her in so I took her in and the doctor doctor at the time has This one in particular has only like three or four times during the first three months of her life and she found heart murmur. The Heart Murmur was not there on Monday it. She had found on Wednesday and she told me she said because she's Kinley with her cleft flip cleft palate They usually go hand in hand Like a heart defects with a cleft lip and cleft palate. They don't know why they usually always find them. mm-hmm and cleft Kiddos. So she was like. I'M GONNA send you to cardiology. Don't think anything of this appointment. I'm not going to Russia. I don't think anything's wrong. Most this kids that are born with heart murmurs nothing so They called me in scheduled the consultation and it was like a month away. I didn't think anything I I thought she was We go to the heart doctor get in there and I had noticed during her echocardiogram that they were focusing law on her. A order I didn't know what it was at the time but I noticed it was focusing on this one spy and then when they said it I knew new was They also were taking her blood pressure a lot and they kept moving at from her arm to her weeks and they just kept telling me. That's normal you now. We just got a check and obviously they don't tell you why they're checking Afterwards they told me that with her congenital heart condition which is correct a arctic. Valves that usually ninety nine percent of the time a blood pressure in the arms is higher than the blood pressure in the lakes wchs. Meaning she's getting more blood flow from her belly button up than she was getting from her belly. Button down which in turn explains why her feet were always turning blue and they miraculously turn red and they would be really hot when she got the blood flow back inner sheet and whatnot but the doctor doctors told us that she had car of the two and that he was really surprised it was not found at birth? He said that she was definitely born with But during her first growth spur in my have stretched it out releasing To the point where it was finally found in the heart murmur summer started we wentz. He wanted to do surgery immediately he but he had to get a C.. T. Scam because he needed to decide decide if it was better to crack her chest or go through her back. Now I didn't know heart. kiddos could go. They get open heart surgery through their back doc but I guess they can. He said that technically it is more painful than cracking their chest because their chest is so robbery at the Asian and that it is easier for them. I guess to recover from but he said going through the bags more painful because they have to go through more more tissue. I guess I'm not sure. That's just what they told me And I he asked me what I wanted and I told him. I said you're the doctor you know what you're doing doing. I want you to choose so Obviously from very young age I learned to advocate for kindling. Just because of all her reflux problems. uh-huh getting hurt dosage. Always up because her Medication was never working right when she would gain weight And he told us that he it was surprised that Kinley had virtually showed no symptoms of it and that he didn't know why all of a sudden it it was fat and he said a lot of times these kiddos. The Co art are never found until they're an adult hood because they have high blood pressure problems and so so on and so forth so he wanted to get a cat scan. And I guess whoever schedules the C. T. Scans wasn't in work work on Monday or Tuesday so I call on Wednesday. They're still not in work so I finally pushed to speak to the manager. Because I'm having you know cardiology call me and asking. We never rescheduled it and whatnot on. She had to have a special kind. She had have sedated. CT Because they had to find out if they need to go through her backer her chest. Well then we finally get the C.. Scared on Friday and he told us off of a win he said. Don't leave the hospital until I tell you he's like I just need to feel good about seventy guys home and I never thought about anything about it and He comes any fines us after the CD SCAN and he says you're not going home Go home and her surgery was going to be on Tuesday and So we were to have Friday Saturday Sunday Monday together in the move Tuesday more than for her surgery and he said you're not allowed to go home it's way tighter than re-thought or it starts to release in within the last week and we said okay. He said he felt having her on the monitors. Twenty four seven was better than sending her home and we agreed. And then and We went in. She ended up being pushed to Monday and They did the surgery and Dan she obviously was in there. I want to say for about eight days afterwards A lot of blood pressure medication. She had really high blood pressure after the surgery and whatnot But basically I just wanted to spread awareness because my daughter's was almost wasn't found it was almost too late because it was Virtually truly unseen on the cat scan part of her Yada And so I just wanted to spread the surroundings the symptoms with my daughter. I did a ton of research afterwards in had I known the signs of what to look for. I hope it could help find someone. Help someone find their kiddos For every twenty six babies that are born with genital heart effect. Only eleven or found that is English rush. It should be way more than I think. Twenty six to twenty six should be found

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