My Madelynn
In December of 1999, Dave and I were so pleased, during our 20-week ultrasound, to be told that we were going to have a little girl. One small catch was that we needed to go see a specialist to look at her heart. They thought they only saw three chambers.
Dave and I have a perfectly healthy little boy and we have never had any health problems ourselves. Why was this happening to us? After a second opinion and interviews with surgeons, we knew we were going to have a very special little girl. After wrestling with our insurance for months to choose our own hospital for her birth, we finally succeeded. I am glad we found out during the pregnancy; it better prepared us to be armed with knowledge.
We were told that 50% of Down syndrome children have heart defects. 1 out of 900 children have Down syndrome but only 1 out of 100 children have heart defects.
Madelynn Allyse Brown was born on March 31, 2000, at 2:30 in the morning. I was determined to have her before April Fool's day. I knew she would be taken immediately to the Newborn Intensive Care to possibly prepare for open-heart surgery. I was so blessed to be able to hold and nurse her before she was taken to the NICU. I thank my sister, Rachel, for all of her help with Madelynn's delivery. Hope the fingernail marks have healed. Aunt Rachel and Dave's brother, Dennis, were chosen for Madelynn's Godparents. Chromosomal testing was completed and no irregularities were found. Thank God.
Day 2 Surprisingly, Madelynn was on no oxygen and was being treated like a normal baby in the NICU and was only being observed.
It breaks my heart that babies go home from the hospital and then decline rapidly, unknown to the parents and hospital they have a baby with heart problems. Heart Defects are the number one birth defect and the number one cause of death in children under one. Still, no regular testing is done for CHD's. I would like to see every baby tested for CHD's, weather it is in the womb or soon after birth.
Madelynn was diagnosed with a rare syndrome called Ive Mark Syndrome. All of her internal organs were reversed, including her heart and she was born without a spleen. Her heart had a total of 10 defects. They had never seen a heart like Madelynn's. We were told that out of 80,000 births at Riley Children's hospital 2-3 babies have Ive Mark Syndrome. All Ive Mark babies have a heart defect of some kind and inverted internal organs, situs inverses. Some babies have spleens and some do not. With no spleen, Madelynn would be very prone to infections her whole life, thus we were handwashing multiple times a day. I always insisted on gloves at all times during her 4 admissions, which totaled 100 days at Riley Children's Hospital in Indianapolis. It was not known if her heart defects were hereditary or a mutation. The research is still very preliminary.
We were blessed because she was beautiful, alert and full of spirit. She spent 22 days in the NICU and proved them all wrong, Madelynn was able to delay her open-heart surgery. Since she was a heart baby, Madelynn had to eat through a NG tube that went through her nose down to her tummy, which Dave and I had to learn how to place before she could be released. She was determined to pull it out all the time. Dave would have to hold her arms down while I would place it in her nose.
Our job, as parents, was to take her home and get Madelynn to gain weight so she could have her open heart surgery June 21, 2000. Doctors were so amazed to see how much she had gained in only 3 months. Madelynn went to the hospital weighing 11 lbs-4oz. For a heart baby that was great, since their metabolism is faster than normal.
The surgery entailed placing a shunt to close off her pulmonary valve and also repairing her total anomalous pulmonary veinous return. The surgery was a success and she was soon moved to the infant floor to recover. Soon there after she developed an infection in her blood stream. A central line had to be placed directly into her heart to inject antibiotics for 3 weeks. I soon learned what S.A.S.H. meant Saline, Antibiotic, Saline and then Heparin. I learned more than what I wanted to know staying at Riley 2 ½ months after surgery.
During her stay, Madelynn also got a G-Tube placed in her tummy to replace the NG tube in her nose. This made her feedings much easier not having Madelynn pull the tube out of her nose. The Nissen surgery prevented her from all the reflux she was having. Less laundry for me in the long run less throw-up!
By August of 2000 she was doing great and I went back to work 2 days a week and my mother watched Madelynn at her home. This saved my sanity, having 2 year old Austin, who was determined to compete for my attention. Madelynn being at my moms worked out great because she was not around other kids with germs and I did not want her going back to the hospital again. Madelynn's therapists came to both our home and my mother's house. The First Steps coordinator evaluations concluded Madelynn was three months behind and thus assigned numerous therapists: an OT, PT, Speech, Developmental and a Dietician. They all came in so very helpful and she flourished and developed by leaps and bounds. She amazed her doctors with her progress.
Dave and I were able to get out for "date night" due to nursing respite hours. I could not bear to leave her with anyone except my mother, due to Madelynn's feeding tube and all of her medicines. My advice is to apply were ever you can get funding for respite hours. Spending 100 total days in the hospital, we were able to get highschool girls to baby-sit for service hours for school. Your spouse needs you too, just as much as your heart baby and other children.
In September of 2000, she unfortunately had a set back. I called the hospital to tell them she was running a fever of 101.4 and was retracting quite a bit. They said to get her there immediately and she ended up having a reparatory infection. Of coarse every test under the sun is always run for numerous things, RSV.. etc. I suppose that is good but it gives parents a coronary. Her oxygen saturation was dropping to the low 50's and that is not good. I remember the nurse calling the cardiologist saying, " Should we give Madelynn more oxygen?" She was amazed when he said that would not help her.
Walking in the American Heart Association heart walk with 6,000 other people with a sign on my back which read " I am walking for my daughter Madelynn" made me so proud to be a heart mom. Raising $2,000 from friends and family was only our first step of making a difference for other children with Congenital Heart Defects.
Currently there is five times the amount of research dollars spent on pediatric Cancer than on CHD related research, yet twice as many children die from congenital heart defects. I did not know these facts when my daughter was alive.
At 6 months old, Madelynn would laugh when Austin would jump off the sofa and was making lots of raspberry sounds. She was getting bigger and stronger and the need for her to get another surgery was getting closer. We opted to get a balloon angioplasty to buy her some time and open up her pulmonary stenosis. Signing those anesthesia papers is the worst all the things that can happen.. Oh yes we must mention that death is an option. I just got numb every time I had to sign those papers.
I found it very helpful to keep a notebook. Every doctor, every test, I documented so I could look up any details. I treasure all the information I have kept journaled, so I will never forget my experience.
Despite all the gagging, doctor's visits and many many prayers, this was our little girl and she was so very precious to us. We took our first camping trip, with both kids, to Turkey Run state park. I carried Madelynn on my back through the ravines and then we stayed in a tent. We just wanted to give her a normal life. Yes, we took the kangaroo pump for her food to be pumped into her stomach all night long and a cooler for her medications. I will never forget that camping weekend. My husband Dave has always been the adventurous one and he was right. Madelynn did just fine and I truly believe she had a blast!
Madelynn was on 10 medicines twice a day and I had to keep a chart to track all of the feedings through her G-tube to track of her total ounces per day to insure her growth. I know the kangaroo pump should have been my friend but at night when Madelynn would roll over and eclude the line and it would beep until I got up and restarted it. I was happy she was rolling over but I needed sleep so Dave developed a special tube to cover the feeding tube so it would not eclude.
October 2000 she kept having continuous ear infections and needed to be admitted once again for another surgeryear tubes. I will not complain. Madelynn was kept in the hospital for 15 days later due to signs of congestive heart failure. Upping her direrectics to get the water off her lungs helped immensely and she came home.
Nine months old, Christmas 2000, was so very special to me because Madelynn drank two ounces of formula by mouth. It was the best gift I could have gotten! She was breathing very hard but I was so very proud of her. She had started to have an aversion to anything in her mouth due to having a G-tube inserted in July. The therapists had been working with her for months to put things in her mouth. Jell-O, sourcream, applesauce. Anything we could try. The one phone call I will never forget, I was devastated to hear from Pam, her developmental nurse practitioner, " Melissa you have to discontinue feeding Madelynn by mouth. Her little heart cannot do it." When she breathed over 60 breaths per minute, all food must be given through the G-tube. Madelynn was getting bigger and her scar tissue was building up in her Pulmonary valves again another surgery would be coming soon. Her little heart was working so hard, especially being a single ventricle baby this was especially hard for her. Madelynn was in the 75 percentile for weight, she was a little porker!
Since Madelynn weighed 20lbs, it was decided to put her on a diet to give her heart a break. That was fine with me considering she just said her first word at 10 ½ months, yes it was Mmmmm.om. That meant everything to me since Austin said DaDa first. She then started saying Ummma for Grandma Carol, my mom. She loved to find Santa at Grandma's house and to point at the Bong Bong clock. She loved her pink Binky and to stand at the table and watch Teletubies. La La was her favorite.
One year old!!! Hurray, we had a big party for her with all the family. She got a pretty purple Easter dress from Grandma Mary. Madelynn was sitting up and rolling over at this point and shortly started cruising around the tables at 13 months. We were so thrilled she made it to her first birthday. I never had a doubt. We got a time capsule for her and I filled it to the rim with all kinds of items from the year she was born, 2000. George Bush and Al Gore on the front page of the paper, hair and car magazines. Tons of pictures and most importantly letters to the future that all the family members completed telling Madelynn what they thought she would be doing in the future. I was so excited to seal it shut. I love surprises and cannot wait to open it in the year 2018 on her 18th birthday.
June 2001, at 15 months, Madelynn and Austin both got their second set of tubes inserted (in all 4 ears) at the same time, since ear infections were impossible to conquer in the Brown house. Big mistake to do them at the same time. They both screamed for an hour after wards until the anesthesia wore off. The vicious cycle of antibiotics, then diareaha and then becoming dehydrated was a norm in our lives. Pedialite was my friend. The good news is that we got Madelynn's weight under control for her upcoming surgery. July 5th they proceeded to complete another balloon angioplasty through her groin to open up her scar tissue and stenosis again. I remember going to Garret's birthday party on the 4th of July, not wanting to think about her going under anesthesia again the next morning. Unfortunately the scar tissue had built up too much and the only way to fix it would be to have surgery again.
Friday, July 27th 2001 at day surgery she weighed in at 21lbs and 8 oz. That was just perfect for Madelynn considering she had been on a diet for seven months. She was my little peanut and the nurse Lori was so impressed that she knew were her little heart was when asked. She knew that it was on the right side not the left. Madelynn was a very bright little girl and was eager to meet new nurses, but when it came time to draw blood that was another story. It was like drawing blood from a turnip, we always had to ask that the transport team came in to draw her blood.
We had to come into the ER the next day to redraw her blood. We had to keep redrawing the blood, we were there for 6 hours. My poor Madelynn, I hate to think how painful that must have been for her. My sister Rachel came and sat with Madelynn and me while we waited for the blood results. We did everything we could think of to distract her from the pain. Madelynn loved butterflies and we kept showing Madelynn her shoes since they had butterflies on them and that seemed to give her comfort.
Being a heart kid, the blood draw process was so very difficult because her blood was thick as motor oil and her veins were so small that they needed a snake light to find her veins with the light off. It was to say the least an exhausting day. They had talked about keeping Madelynn overnight to watch her levels before the surgery. Thank God she could come home that night. We are so blessed to live 10 minutes from the hospital.
July 30, 2001, Monday Madelynn underwent her second open heart surgery to have a Bi-Directional Glen Shunt, otherwise known as the Hemi-Fontan. After arriving at 6AM and waiting all day until 4PM, Dr. Turrentine said the surgery was a success! He said her pulmonary veins were still very small and he would leave her breast bone open for a few days to let the swelling go down on the heart.
The most common question I got asked by non-heart families was "Was she awake" No, the whole time Madelynn was on a ventilator and was unconscious with no movement. Could she hear us? Well that is debatable. I hope she could because we talked to her and held her hands all the time. We surrounded her with her favorite toys and pictures of her family.
Day 3 (after surgery) her sternum was closed in the operating room
Day 4 8:30 AM my mom and I witnessed Madelynn coding and being recessitated by her nurse Krissy, kneeling over her on the bed giving compressions to her heart. Timing was impeccable because little Jordan Baker was on the table prepped and ready for incision by Dr. Turrentine and they took him out for my Madelynn to have emergency surgery. She was on the Heart Lung By-pass machine until 3:30. They said her little heart was drifting and was weak. It was a miracle she came off at all. Rachel and I were there with her at 11:30 PM that night when she coded again. We were singing to her at the time and each of us was holding her hands. Her pulse and blood pressure dropped to zero and the heart compressions started again. My sister assures me that was the time when our sweet Madelynn left us. Dave was sleeping in the next room and we were all with her as she was stabilized. I called the priest who had baptized Madelynn and Father Joe Pesola came at midnight to pray with us over her. Melinda Revelli, Fr. Joe, Rachel, Dave and I were just full of sadness. This did not look good.
Day 5 Madelynn started to have seizers shown on the EKG machine.
Day 7 Madelynn had arithmia through the night and her blood pressure and O2 saturations were drifting. She got her sternum closed once again and he tied off her shunt.
Day 9 Madelynn was not urinating and the kidney doctor suggested Dialysis thru an artery and that was ruled out because of veins being so small.
Day 10 Madelynn was diagnosed with kidney failure. They upped her diuretics to help her to urinate.
Day 11 They ordered her to receive physical therapy
Day 12 Madelynn's Jugular vein, in her neck, was at a pressure of 22, which is not good. Her O2 sats were dropping to 65. Normal people are at 100%; Madelynn was normally in the 70's.
Day 13 .Dr. Turrentine put Madelynn in isolation and ordered all people to wear gloves and masks, to scale down the visitors. Her levels of toxicity were rising as the days went on, since she was not urinating very much.
Day 14 The neurology Doctor alluded to the fact that we might start talking about Madelynn's brain activity. This was not anything I wanted to hear. I said I needed proof and he said he does not order kids to go down to x-ray being on the Nitric Oxcide Gas. It was too dangerous to take her down with all the equipment. Dr. Turrentine overruled and she had a CT Scan on her brain that day. Eight people accompanied her with her venitilaor and Nitric Oxide and all of her meds. There was no bleeding in her brain, which was good.. We then proceeded to compete numerous tests. After her paralytic was turned down, the SSEP would be completed, an electrical stimulus on her little hand and then to look at the EEG to see if there was any activity in the brain, after her hand twitched.
There are 2 parts of the brain:
The upper brain, Cortex, which controls all involuntary actions: smiling, laughing and talking.
The lower brain, Brain Stem, which controls all voluntary functions of the body: heartbeat, breathing, urinating.
Unfortunately, there was not a signal and we were told this meant no chance of recovery since brain cells do not regenerate. There was no function in her Cortex. This meant that she would be in a vegetative state forever. All I could think about at this point is that I felt like throwing up and what were we going to tell little Austin. He had been told his baby sister is getting her heart fixed and will come home soon. Dave and I were just devastated to hear this news. We had spent the day in the chapel and walking around the campus to keep our spirits up.
The second test was a brain blood flow study, to see if there was any blood flow to the brain. Dr. Anderson informed us that she had little to no blood flow to her brain. Her brain was shrinking due to cells dying.
Dr. Turrentine was very pessimistic of the outcome of Madelynn's heart. He said her valve was leaking 65% and her pulmonary pressures were too high and there was still pulmonary vein obstruction. She at this time was on 100% Oxygen and 41 Nitric Oxide. Her little heart was not very strong and it was tired.
Day 16 after running an EEG on Madelynn's little head for 30 minutes and there was still no cortical activity, this was the absolutely the most devastating news of my life. My husband and I sat in a big cold conference room with the Cardiologist, Dr. Hubbard and the Neurologist, Dr. Anderson. They were very kind in their choice of words, but how does one really master telling parents there little one would never be the same child they once knew. In a matter of holding my breath I knew what had to be done. I took a deep breath and said how about Friday, we will have the priest come and be with the family and that will be the day. I think my husband was stunned I made the decision. I knew this would be no life Madelynn would want to live.
Day 17 I requested to have Krissy, the nurse who was on duty with Madelynn when she coded, to be the one to disconnect my baby from all this earthy pain. I also asked that I could have a copy of her CT scan on her little head, I know one day I will very much doubt if I did the right thing and it will help me to know that I did. We met with a child psychiatrist to get guidance on how to tell her brother Austin who would be 3 years old in 1 short week. I was so worried what we would tell Austin about his little sister.
Dr. Meighen said "Keep it simple with little ones". "Children do not understand finality until the age of 9" "Madelynn's heart was broken and it could not be fixed" She is in Heaven"
I think it helped to talk to her for my own sake as well as for Austin, she was so comforting, like it would all be ok. We also had to tell friends and family of our plans for the 17th of August. My sister Rachel and I decorated Madelynn's PICU room with photos and candles.
Day 18 August 17th, Dave and I both could not sleep the night before, I remember wanting to compose Dr. Turrentine a thank you card for all that he had done, I kept thinking how terrible he must feel that he could not save our baby. The priest and the family came to Madelynn's room at noon and we said some prayers around her and everyone took some personal time with my sweet baby. She was so very swollen, and they had just put her in an air mattress since she was starting to get bedsores on her little back.
I requested that all of the leads and beeping things be taken off of her. I also wanted Krissy to dress her in her favorite Teletubbies shirt and shorts with white socks and of coarse a yellow bow to match La La. The only item attached to her was the respirator. It was time, everyone left the room and it was Dave and I alone with Madelynn in the room, I held her in my arms rocking and singing her favorite tape that we played for her at bedtime every night at home. I just kept rocking her and patting her as I held her head close to my chest. I noticed that she was wet and instinctly wanted to change her diaper, I think I was loosing it at that time.
I have no concept of how long we were in the room, I just know that I kept rocking her and singing to her, my eyes were closed the whole time I was rocking her, because I did not want to have any visual of all the machines and the white sterile room. I felt Madelynn's first breath when she was born and I was about to feel her last. I was ready and motioned to the nurse to go ahead, my eyes still closed and I kept rocking her. I felt Krissy take the ventilator out of Madelynn's mouth and I felt my heart skip a beat and then feel like it was going to stop. Then it soon changed as I felt Madelynn's body become limp on my chest, I was in a state of deep peace. It came over me as I felt my baby sink into my chest with her last breath. I felt her become one with my body and I felt so much peace. Then after a minute I felt her spirit lift up out of me as if it was going up to heaven. It was the most peaceful experience I can not begin to explain how numb I was at the time and so peaceful. Everything seemed to be in slow motion.
I continued to rock her and stroke her hair then I knew it was time to say goodbye, I laid her down on the bed and Dave and I both kissed her. She looked more normal at that time than over the past 18 days since she was not hooked up to anything and was free of all the drainage tube, lines and needles to draw blood. Madelynn had a great life and was loved by everyone that she touched. We were so very lucky to have our sweet baby girl Madelynn Allyse Brown for 16 ½ months.
No matter what challenges we are faced with, do not forget you are not alone, Jesus is walking with us the whole time. Everyone at some time in there life will have a cross to bear and some are heavier than others, that is why we must be willing to help others carry their cross.
Melissa Lamb Brown, Indpls, IN
Mommy to Sweet Angel Madelynn Allyse, 3/31/00 - 8/17/01
DEX,TAPVR,TGA,DORV,PS,PR,SV,ASD,AVC
Mommy to Austin 8/26/98 heart healthy
Mommy to Payton 11/18/05 heart healthy
