I have handed my son over to surgeons knowing they would stop his heart, and prayed that it would beat again. I have learned more than I ever thought I could. I have cried more than I ever thought possible. I have celebrated victories and milestones that others never have to. I have walked a road I never knew existed. I will walk this road forever. I am a mommy to a CHD Angel ♥ iLy Kayden James

Tuesday, February 10, 2015

Faces of CHD: Aliyana


March 13, 2012, I went in for an ultrasound and our baby girl’s heart rate was in the 70s. They did not know what was going on, but I did. Aliyana Grace had complete heart block: a rare heart condition where the electrical system is disrupted and the atrial and ventricles do not communicate, which causes a dangerously low heart rate.
I was at NYU the next day for a fetal echo and her heart rate was in the 50s. I was started on steroids: meds that made our hearts beat faster, plaquenil, and ivig treatments. We were told she would not make it.
We did not give up, however, and I was determined to fight as hard as I could as long as she kept fighting with me. We fought until I went in for a regular ultrasound at 34 ½ weeks and found out I had no fluid. That night, June 19, 2012, at 9:30pm our beautiful girl was born.
She was immediately taken from us and they got her heart pumping enough. The next day she was temporary paced. She did great in the hospital and won the hearts of everyone who came to see her. She had such a big personality for such a tiny 4lb 13oz baby!
At one month, Aliyana was scheduled for her permanent pacemaker. She got through the surgery like the little fighter she was, and we were expecting to bring her home very shortly. We soon found out that her lung collapsed due to the breathing tube in too deep during surgery. It was just too much for her.
A week later God took our Aliyana to Heaven. We had 5 weeks with her and it was the most amazing 5 weeks of our lives.
Our hearts are broken and we will never be the same, but we are sure our little angel is watching over us.
There is not a minute that goes by that we don’t think of her.



Monday, February 9, 2015

Faces of CHD: Brooklyn

Hi my name is Alison McGough and I am Brooklyn's mom
Check out Brooklyn's story
Brooklyn has Shones Syndrome a sublet of HLHS
She has had 4 OHS's and has more to go.
We were told at 1st that the Norwood, Gleen and Fontan might be in Brooklyn’s future. They said that they would try to avoid it if possible. We prayed they could b/c what we knew was if she had these 3 OHS she would most likely need a heart transplant in her future. At 9 days old she went in to CHF and was rushed to the hospital. She was flown to Atlanta’s children’s hospital @ Egelston where at 14 days old she had her 1st OHS they did the Cortication repaired. Her 2ed OHS was a Valve Replacement which failed. Her 3ed OHS was the Ross/Kono they took her pulmonary valve and put it where the Aortic use to be. Then they took the cadaver valve of a 6month old and put it where the pulmonary valve use to be. Her Left ventricular was too small so he cut a hole in the wall to expand it and put a patch on it. She has had MANY angioplasty’s (I don’t even know how many, lost count) but always we were able to avoid stints. We were told that she could live with her mitral valve till her 60’s but 3 years ago it started to fail. They said 1-3 years we would get the mechanical mitral valve. It has been 3 years and she is at a severe rate but her heart is still handling the stress. The Dr’s want to wait as long as possible before giving her this new valve. The bigger she is the better. They watch her closely and each time they give her 3 more months. It is like a ticking time bomb. She was tube feed for the 1st year. After each surgery they would bruise her left vocal cord and so it was paralyzed temporally. The vocal cord is wrapped around the aortic arch so they would have to move it out of their way when working on her heart. At 10 years old she had her fourth open heart surgery, they repaired her mitral valve instead of giving her a mechanical valve, she is doing well. Today she is 12 years old still going to the cardiologist and waiting for the cadaver valve to be upgraded. We are so blessed!
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Sunday, February 8, 2015

Faces of CHD: Devilin


Devilin Avery Roberson was born June 13,2011, at 6:37 am. He was 6lbs 13oz. We were told he was healthy and were planning on going home the next day. I noticed he was looking a little blue and called the nurse in. He was taking to get his O2 checked. The doctor that had looked at him that morning came in and told me Devilin was very sick and his O2 was 62% out of 100%. They were working on him and didn't know what was wrong. I was told UVA had been contacted and he was going to be transported. We left when he did and waited at UVA in the NICU
waiting room. Final
ly a doctor came out and told us he was still very sick and had a breathing tube and they think it was an infection and he should be home in a week. Derrick and I went back to see him. We went home for the rest of the night. The next day we come in to see him to be met by a team of cardio. surgeons. It was then we knew he would not be going home in a week and we had a long way to go. He had TGA and a VSD along with a narrow aortic arch. He was taken to surgery a week later. He came through the surgury came off ECMO 24 hours later and seemed to be getting better. About 3 weeks later he had gotten an infection in his blood and that was the first time we almost lost him. We were asked not IF his heart would stop but WHEN his heart stops what we wanted them to do. He was then a DNR his little body would have not tolerated CPR. He was a little fighter and turned around. The infection along with other problems made it too hard for his little body to recover. We were told the only thing they could do for him was try to keep his pressures up and keep him comfortable. We decided to take him off all support and let him go peacefully. He passed away Aug 9,2011 surrounded by his family.


I want to share Devilins story to help family's that are just finding out about CHD and inform people before it's too late for there little ones. We were going to be sent home the day Devilin was rushed to UVA. If we would have been sent home it's a good possibility he would have passed away that day at home, but he didn't and we got almost 2 months to spend with our little boy. We miss him everyday but Know we are lucky to get that time with him.





Saturday, February 7, 2015

Faces of CHD: Pierce

Pierce was born October 26, 2009. I never knew anything was wrong with him until shortly after he was born. He was diagnoses with critical arotic stenosis. A narrowing of his aortic valve. At the thime Batson Hospital could not treat Pierce, so they flew us to Children's National Medical Center in Washington D.C. I had to leave my other three children behind. We stayed in D.C. for a month and they said that the only way to help Pierce was to get a "New Heart." So we boarded another plane and flew to Arkansas Childrens Hospital to wait for a heart transplant. We were in Little Rock for a month and a half. Pierce lost his fight before a heart became avaliable on January 15, 2010

Please visit  the Pierce Allan Helms Memorial Silent Auction page on Facebook: https://m.facebook.com/PierceAllanHelmsMemorialSilentAuction

To read more about Pierce's journey and what his family has experienced please visit any of these pages!












Friday, February 6, 2015

Faces of CHD: Kayden

Kayden was born on December 21, 2007. He was born with dilated cardiomyopathy and a displaced tricuspid valve with severe regurgitation. He also had a bilateral cleft lip and palate and at a month old developed pyloric stenosis. Throughout his first year, he was seen regularly by his cardiologist and his heart improved. By his September 2009 visit, Kayden had almost normal heart function and his cardiologist felt it was safe to not see him again for a year. Kayden was basically like a normal child for his first 2 and a half years. He developed a preauricular cyst beside his ear, which needed removed in June 2010. No one exactly knows what happened but he continued to have complications and the cyst kept returning. In July 2010, Kayden was diagnosed with Congestive Heart Failure, my son was a fighter since birth but this began our toughest battle yet. He was in the hospital for around 10 days while the doctors got him on some medications for heart failure. He had his first cath in November 2010, we had 3 options, tricuspid valve repair or replacement, or a heart transplant. His pressures were too high so the cardiologists and surgeon at UVa didn't think he would survive a valve repair or replacement. Instead of jumping into the transplant decision, they wanted other opinions. I finally got a call from a cardiologist in Boston, MA who said Kayden might be a candidate for a cone repair, and possibly do the glenn on him also. We weren't scheduled to go to Boston until April 2011, but Kayden had other plans of his own. He continued to get sick, a cold or ear infection would send him to the hospital for anywhere from a few days to a week. In February 2011, he was sent basically because of his heart. He was just sick, no cold or anything. His heart was just failing. That's when his cardiologist said he really needed the surgery soon, little man was sent home on oxygen at night and as needed during the day. His cardiologist got in contact with Children's Hospital Boston, and they rescheduled his surgery to March 2011. So we drove from Roanoke, VA to Boston, MA on March 17, 2011 Kayden had his first and only open heart surgery. He did well with his surgery and recovery, we were there for only 3 weeks!! The doctors were very surprised with this, as he had a very unique little heart and had already heard so much from his team in Roanoke. We were home for about a week and he was starting to need his oxygen again, but now it was all day and all night. Come to find out he developed a pleural effusion(fluid build up around his lungs), this hospitalized him again. He was in there for a week with a chest tube to drain the fluid. This still wasn't enough, he continued to go downhill and the fluid kept coming back. By the end of May, his last appointment with his primary cardiologist, he told me Kayden just needed a new heart, that was the day he told me Kayden was his sickest outpatient he had ever had. He also said only about a handful of people in the US have a heart just like his, so that made it even more complicated. He scheduled us an appointment at UVa with the cardiologists to begin the transplant evaluation. He told Kayden before we left, he hoped he would see him again but next time he hoped he was running down the halls. I held back tears, knowing the possibilities of what the future held. June 14, 2011 began our stay at UVa as a transplant patient. That day they told us during the stay, if his kidneys or anything started failing he would be transported to Boston, to have his glenn taken down and placed on ECMO. He was evaluated and finally listed as 1A on the heart transplant list June 28, 2011. He was on the ventilator for a couple weeks and finally got off of it a few days after July 4th. When they took the breathing tube out, he took a nap. When Kayden woke up, he couldn't speak, or control his movements. We had NO IDEA what had happened!! They put him on some medication that helped control the movements and it helped some, though he still wasn't his self. He had developed chorea, I'm guessing from where he was on the ventilator so long. In the early morning hours of July 14, 2011 Kayden took his last breath. Kayden was 3 years 6 months and 23 days old the day I lost him. Today is February 6, 2015, to some of you it may mean nothing but for me, it means my son has been gone the same amount of time as he spent on Earth with us. Tomorrow, Kayden will be gone longer than he was here. Kayden only was listed for his new heart 2 weeks, in reality, I don't think he ever had a chance. I think we waited too long to decide to do a transplant on a sick little boy. I still feel partially responsible, as his mom I feel like I should have noticed and said do the surgery and then bring us home to be evaluated and listed for transplant. We ALL knew he would need one, we were just wanting him to get his strength built up before doing it! My heart hurts, a part of my future was stolen from me. I have 4 other children who will grow up without a piece of them. Kayden had a huge heart, and I say it was so full of love, he didn't want to give it away. A promise I made to him was I would fight for him until I took my last breath. He may not have understood me, but I know I made that promise. So I will continue to fight for CHD Awareness, and be an advocate for Organ Donation. Kayden was, is and will always be my HERO! He is an inspiration, he went through 6 total surgeries in his short life, and no matter what he was faced with continued to smile through it all! Our family misses him more than anything in this world, and he is one little person who truly left his mark on this world. His story will continue to be told and spread throughout the world until everyone knows about Congenital Heart Defects. 

To follow Kayden's memorial page and updates on a memorial fund in progress go like his page on facebook www.facebook.com/kaydenjameschdangel




Faces of CHD: Brinly

Our daughter gave our family a crash course in cardiology when she was born. Little did we know about the pediatric cardiology world and that that it is the most common type of birth defects as well as the leading cause of birth defect-associated infant illness/death. The statistics are startling that 1 in 110 children will be born with a CHD.  Brinly Barker is 6 years old and came into this world on December 4, 2008 fighting. She was resuscitated at birth and sent to the intensive care nursery. She fought for 2 years and turned blue along with struggling to gain weight. At the age of 2 she weighed less than she did at 9 months. We continued to take her to the doctor but they had lots of reasons why the things were happening. Finally we said enough is enough! To the surprise of our family she had a Congenital Heart Defect. We got a crash course in cardiology and learned that she was fighting for her life. Luckily we were able to catch it. So many student athletes have lost their lives and there seems to be so little ever mentioned about CHD’s. Brinly was followed very closely for the next 3 years as they thought she was a very good candidate for a relatively new procedure. Brinly had surgery on March 25th, 2014 and just began Kindergarten. She has a contagious smile, never meets a stranger and doesn’t let anything get her down.  She loves playing with her cat Simon, being with her big brother, boating and playing with friends. Since her surgery she has been able to enjoy cheerleading and swimming! I want to raise awareness about Congenital Heart Defects. Everyone thinks of an elderly person, someone who is overweight and/or someone who doesn’t take good care of themselves. They don’t think of their child or newborn. If we can save one person then we have done our job.


Faces of CHD: Tanesha

Tanesha was born on the 31st may 2009 at 5.55am weighin 9lb 10oz 14 days late after a normal but painful pregnancy (mornin sickness throughout,spd,sciatica) 2 scans and a very painful forceps delivery leavin me with 32 stitches but I dint care I had my beautiful baby I stayed in hospital for 4 day cos I was on a drip for blood loss and tanesha slept most of the time maybe wakin a couple of times for feeds,she was a struggle to feed from day one wouldn't latch on and when she did she would come straight back off so I mention to the nurse and she said its prob the drugs(pethedine) I had in labour so I rested til I was allowed home .

We arrived home and my family came to see her with a gift of clothes and teddys for her all while she slept ,as the days went on I still struggled to feed her so a breastfeedin link worker got brought in to try help but she didn't know what was wrong as she was latchin on but seemed to be fightin with it and come back off and when I bathed her I noticed she was breathin fast and bobbin her head I told the midwife and she looked at her carefully while counting her breaths which was 71 so she said she would start to weigh her and see what happens.

3 weeks on now and still no better wi feeding and sleeps most of the time and I'd started to notice she was sweaty and had a cold clammy feel to touch so again I told the midwife somethings wrong and she weighed her and she had lost 70g overnight so she said right we will have her in so I was booked on the assesment unit at BDGH where they checked her and came to the conclusion that she had reflux and sent me home with gaviscon so over the weekend I tried it with no improvment so on the monday I took her back as now she had started vomitin every feed (what lil bit she had) a lovely young doc came to see us and saw her vomit all over floor as he walked in the room so he picked her up and wiped her down and lay her on the bed checked her femorals and her liver which was very enlarged and then seem to spend ages listenin to her chest I asked if all was ok and he said ill just be a min and left the room then in walked another doctor 5 mins later tellin me he had gone to get the registrar he listened too a few times and said they need the registrar there so I waited for what seemed like forever ,he walked in the room and introduced himself and looked and my baby said she's beautiful and listened then he turned to me and said "I'm really sorry we've found a heart murmer has anyone else mentioned it " I said no is she goin to be ok ? I got no answer except that he was sendin her for an xray of her chest and bloods doin ,we went and came back and waited a doc came in and said the results showed streaks on her lungs so they wanted to do a lumbar punture I refuse so they said well will get someone else to see u .

An hour later a curly haired man dr kerrin came to see her he was lovely he said she didn't need the lp as he was 99per cent sure it was her heart and that they was transferrin me to leeds the next mornin so all that night I sat watchin tanesha sleep as I sat cryin by her cot I was so scared , the next mornin they got an ambulance to take us to leeds with a nurse when they they took us into a room with a big machine and was asked to undress tanesha and lay her on the bed straight away the doc said she is very breathless and she started the scan ,my heart was poundin so much I could have sworn u could have seen it through my top after what seemed like hrs scannin she turned to me and said " there is something wrong with ur babys heart she has COMPLETE AVSD(COMPLETE ATRIOVENTRICULA SEPTAL DEFECT) I will draw it to explain" and she went got some paper and started to draw, I struggled to see it as tears started to fill my eyes I tryed to ask questions but the words wouldn't come out so I kissed tanesha and passed her to the nurse and ran to the toilet to be sick and rang my sister and family .
When I came back out they had already put an ng tube for feedin and oxygen tubes on her she was so upset I just sat there crying holdin her I'll never forget the look on her face as I picked her up she was so frightened the next few days was a blur nurses takin blood docs doin tests I just wanted them to leave her alone it drove me insane hearin her cry all the time and not able to do anything , the docs on ward round said the same thing every mornin "she needs surgery as soon as possible". She was slowly gettin worse wasn't keepin anything down now and her weight was 7lb 4 and they kept her sadated most of the time cos her hr. Would hit the 200s .
2 week after gettin there the nurse told me the surgeon wanted to see me intoduced himself as kevin watterson (god or magic hands) his words I will never foget he said" this is a serious condition a very hard surgery we have to patch 2 holes one at the top and one at the bottom and then split the common valve and hope it don't rip cos it will be paper thin ,she has a 1 in 4 chance of dyin on the table there was lots more he said a lot after that was a blur he said any questions and I just shook his hand and said plzzz fetch her back to me and he nodded and said I will do my very best and left the room I sat in there for a good hour cryin and gettin my thoughts together as they was takin her down at 8 the next mornin and the thought of maybe not seein her again kept seepin through .

The next mornin at 8 they gave me gown to put her in and we walked down to the threatre it was the worst day in my entire life she lay there looking at me as they placed the mask on her face I felt so guilty with tears rolling down my face I kissed her cheek and wispered ill see u soon I walked out the doors clutchin her teddy she was holdin.
My friend who came with me and my sister tried to keep me occupied but the pain was so bad my mind wouldn't wonder far from my phone as I glanced every few mins it seamed. Mr watterson said it would take around 8 n half hours it was a very long day 8 hours came and went and nothing I went and sat back on ward 10 pacin the ward after 9 hours one of the nurses said they was takin her to cicu so I could go down , I got in there and I was scared there was so many people round her bed that I couldn't even see her I had to go into a room cos mr watterson wanted to talk with me so my sister came with me I sat there shakin as he walked in the room and he smiled and said it went well but was a very difficult op he had had to change a few things as her valves was too thin to sew them the way he would normally and they would have ripped otherwise I was too upset to ask anything my sister asked all the questions as I listened I went over and shook his hand and said thanku soo soo much I will never forget what u have done and he smiled and left the room . We was took to see tanesha she was so swollen tubes coming out all over and her chest was left open cos he said her heart was very enlarged they said the next 48 hours are critical .

The next 2 days went so slow they kept her asleep and giving her lots of dif meds to keep her stable her blood pressure was up and down and she had complete heart block so she was on temp pacin wires but she was doing well , I sat by her bed day n night takin breaks for food and naps, I was scared to touch her at first cos of her chest been open it took a week before they could close it so I was real happy when they did as they could try to wake her up soon so through the next week they weaned her down so they could slowly wake her I was so happy when after 2 week she opened her eyes for the first time.


She went back up to hdu 3 week after her ohs and seemed to be doing well but was still on the pacin wires as her hr was too low so was talkin about puttin a perminant pm in but didn't want to as it was risky so they left her for a while and just kept checkin the voltage on the temp ones and they needed to get a canula in but it was a struggle as all her veins had shut down so they decided to change her arterial line in her neck and use that I was a total bitch that day flipped over everything they prodded and poked her all day told me it was guna take half hour to change it and an hour and half later they was still holdin her in same position tryin to get line in her neck so I flipped and was took off by the psycologist and I'm not ashamed to say that all this crippled me mentally and because of the line change she caught septacimia and had to have the line removed and they managed to get one in her arm to use for 10 days antibs I came in one mornin and she was grey I thought I was losin her I screamed at the nurse to get the doc and he came and said it was cos of the septacimia and they was doin all they could and if she dint improve by the next mornin they would take her back to cicu as they was nothin more they could do for her but one of her cultures and scans also showed she had nec of the bowel so she then had to go 7 day with no food just iv fluids this was complete agony for me watching her starving I couldn't hold her has she screamed for milk and I just broke down was seein the psycologist a couple of times aweek by now it was good to get my feelings afears out as I was on my own the whole time and I did give the nurses a hard time I do hope they now forgive me for that :s

Tanesha made slow but steady progress and we slowly got moved up the ward closer to the door we met some wonderful people in the lgi a couple of people I spent a lot of time with I was sad to leave them but glad to be going home well back to our local for feedin cos tanesha was still tube fed and after 8 week at the lgi tube feedin was a doddle so I was happy and after a week in barnsley tube feedin her myself we went home without the ng tube fully breastfeedin I was so happy but scared but the nurse came out twice a week for 2 month to check her sats and heart rate and she continued to do well I continued to check her sats at home and in august 2010 I found her hr to be 55 after she had become more tired and was sleepin more so I rang nhs direct and they rung ambulance so we went back into hospital where they put her on a 24hr monitor (after me arguing wi docs cos they said she looked fine ppfft) the 24 hour ecg showed she had complete heart block and we was transfered back to leeds where she had a pacemaker fitted all went well and we came back home 2 days later she still gets breathless and sweaty but this is due to her leaky valve and seems to pick up a lot of infections but she is doin great I am sooo greatful to kevin watterson/warresena and all the staff at the lgi I know she will poss need more surgery as she grows on the valve and pacemaker changing but she is strong in every way, a true fighter,my little miracle xx

amanda
taneshas mummy