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Laura's Story
On this page you will find a story about my daughter that was born with congenital heart defects and died when she was 11 days old after having unsuccessful heart surgery.
Laura had:
- DiGeorge Syndrome - DiGeorge Syndrome is a complex birth defect that often has a combination of congenital heart defects, anomalies of the great vessels, esophageal atresia (congenital failure of esophageal tube to develop) and abnormalities of facial structures. In most cases there is a chromosomal defect on chromosome 22.
- IAA - Interupted Aortic Arch Type B - With Interupted Aortic Arch a part of the Aorta is absent. This causes an obstruction of blood to body.
- VSD - Ventricular Septal Defect - VSD is the most common heart defect. Referred to as a hole in the heart, it is a hole or connection between the
left and right ventricles.
- BAV - Bicuspid Aortic Valve - A Bicupid Aortic Valve has two flaps that open and close rather than three flaps that a normal Aortic Valve will have.
- Mitral Valve Regurgitation - Failure of the valve leaflets to fully close. In its mild form, very common and requires minimal medical attention. In severe form, usually leads to heart failure and requires surgical repair or replacement of the mitral valve.
Laura and I on June 5, 2001 She was 2 days old.
Laura, 3 days old
Laura's Story
After trying to get pregnant for 4 years and having one miscarriage, Allen and I were delighted to find out I was pregnant again. The 9 months of pregnancy went well. We found out we were having a girl during my 16th week of pregnancy. We were so happy. All during the pregnancy we talked to her and sang to her. I played special music for her and read to her sometimes. I felt her move around 22 weeks of pregnancy. It was wonderful! Allen first felt her move when his hand was on my belly on Feb 25, 2002 around my 24th week of pregnancy. It was so amazing. He was so happy and proud. I’ll never forget the look on his face that day. On March 18th I was laying down next to Allen and he felt the baby kick him on his belly. It was so funny. We began a nightly ritual of spending time with her. Every evening when we would lay down and talk to her, she would be very active and responsive, wiggling around in my belly. I was getting bigger and bigger by the day. We were preparing the nursery, and getting everything ready for arrival.April 2, 2002 my heart rate went to 160’s while I was at work. I called Dr. Chism and he instructed me to go to the hospital in Dublin, Georgia. Everything looked ok with the baby, but my heart rate kept beating too fast so he put me on Tenormin 25mg once a day. On April 6th I was at work again and my heart rate was too fast. My Tenormin was increased to 50 mg once a day. I was instructed not to work unless my heart rate could stay below 120 during activity. That never happened, so I was put on medical leave from work starting April 7th. My blood pressure was normal throughout most of the pregnancy up until the last few weeks. I had to have weekly or twice weekly Dr visits from April to June. During the last month of pregnancy I gained about 30 lbs. of fluid retention. My feet, legs, ankles and hands were so swollen. I carried her to term and delivered "Laura Paige Pittman" on June 4th by c-section after 18 hours of non-progressed labor.
As far as we knew we were having a healthy baby. We had a lot of prenatal testing because she started getting so big, I was having problems with a rapid heart rate and my blood pressure was a little high. (Later, the doctors at MCG in Augusta, GA say that didn’t contribute to her problems) She was 8 lbs. 14 oz and VERY pink and beautiful. She had a little blue discoloration and swelling on her right eye that the pediatrician assured us was just a blocked tear duct or a hematoma and not to worry. Also, we were a little concerned that her fontanels (soft spots) were very small and not quite normal. We were told not to worry about this also. The day before we were discharged from the hospital a pediatrician came to tell us that they had detected a murmur. I started crying uncontrollably. He tried to reassure me and tell me that it was probably a benign VSD that was in the process of closing and they would recheck it at her 2-week follow up appointment. Later I found out that a nurse in the nursery named Tammy had discovered the murmur. Tammy was also the first nurse to care for Laura after she was born. We owe so much to her for taking such wonderful care of our little Laura.
I am a registered nurse who just so happens to have a nephew with Down syndrome. He had congenital heart defects and multiple surgeries. So I was very paranoid and worried about a murmur. Since our family had so much experience with heart problems, we wanted some reassurance that Laura’s problem was nothing to worry about. My Mom and sister Christy took care of the referral to a cardiologist. We were discharged from the hospital Friday afternoon June 7, 2002. Thankfully, we ignored the doctors and made an appointment with our trusted pediatric cardiologist Dr. William Lutin at MCG in Augusta for the following Monday June 10, 2002.
We had a wonderful 3 days at home with her. She had been nursing since a few hours after she was born and wasn’t having any trouble. She was a perfect little baby. Our families visited, we took lots of pictures and videos of her. We spent a lot of time bonding with her. My Mom taught us how to bathe her. Christy taught us how to get through some of her upset stomach episodes. Allen was so good with her. He really spent a lot of time holding her, rocking her, changing diapers, talking to her and singing to her. It was a beautiful thing to watch those two together. They looked so much alike. It took about 3 days before I could see the resemblance. Everyone including the doctors said they looked exactly alike. We changed her clothes and played dress up with her all the time. We had so much fun with her. I was finally a Mom and I was very proud of it. Often I would just look at her and cry because she was so beautiful and I loved her so much. Despite all the sleepless nights, I was the happiest person alive.
Mom, Christy, and my nephew with Down Syndrome Blake and I set out very early Monday morning to go to MCG. We met my sister Lisa at the clinic. Dr. Lutin listened to Laura’s heart and immediately said it wasn’t a benign VSD. He instantly did an EKG and Echo and the bad news started pouring in. He was very happy we got her there when we did, because she was just starting to go into heart failure. Looking back, if I had to think of any symptoms she was having, it would be sleepiness, fast breathing and decreased urine output. But it was all so minor that I didn’t think of it as a problem at the time. Initially he told us he thought she had coarctation of the aorta, a bicuspid aortic valve and a very large VSD. With aortic problems, the patent or “open” ductus arteriosis is the only thing that was keeping Laura alive. Luckily hers had not completely closed yet. If it had closed at home, she would have died within hours. I would not be coping very well if we had a crib death. Anyway, they immediately put her in the NICU and began plans for her heart catherization. They put her on prostaglandin to keep the ductus open and she was fine for 2 days while waiting on her cath.
Both our families spent time with Laura in the NICU. The unit had very liberal visiting hours. We could visit 24 hours a day if we wanted to. The only rule is that it had to be no more than 2 people at the time. We all shed so many tears for her. She was the best little baby and got more beautiful every day. We put stuffed animals in the bed with her. Some of the animals said little prayers when you squeezed them. All of the nurses were wonderful and we had a nice experience. Laura had a PIC line in her left hand that went all the way up to her heart. They said that would stay in during her entire hospitalization and would prevent lots of future sticks. A Nurse Practitioner re-hydrated her umbilical cord and inserted a UAC (umbilical arterial catheter) which allowed them to measure pressures and draw arterial blood for testing.
She couldn’t eat because of the UAC, so they gave her nutrition through her veins with hyper alimentation and lipids. It was hard to see her feel hunger. A pacifier helped some, and encouraged her sucking reflex to continue. I was determined to continue to breast feed my baby so I was pumping and storing my milk in the NICU freezer. I just kept getting bottle after bottle and filling up the freezer for her. It was the only thing that I could actually do for her. I could visit and be there for her, they let us hold her several times, but I really felt like I was being a good mother by putting up that precious milk for her. One of the many hard things I had to do was leave that hospital without my baby and without all that milk from the freezer, just to let it be thrown away.
The cath day was terrible. It was an 8 hour long ordeal because they weren’t getting the images they had hoped for. Originally, they diagnosed her with coarctation of the aorta because her aorta wasn’t visualized as well as they would have hoped in the echo. I only wish it had been coarctation instead of what they did discover. They diagnosed her with IAA (Interrupted Aortic Arch), VSD, bicuspid aortic valve and mitral valve regurgitation. The news wasn’t good at all and it changed all of the plans for surgery. Instead of a relatively simple procedure, it became this rare heart condition, difficult surgery and the possibility of a chromosomal disorder as well. We were all devastated at the seriousness of her condition. My heart was breaking for my baby. I wished I could switch places with her and take away all her troubles so she could lead a normal happy life.
We had 2 more wonderful days with Laura in NICU before her surgery. The night before her surgery I could tell she was beginning to tire. Her nostrils began to flare a little, her chest was having retractions and her respiratory rate was still rapid. She was having very frequent PVC’s due to the irritation of her heart from the long extensive heart cath. We held her and rocked her several times, and I could see that any stimulation was more tiring for her so we tried to let her sleep as much as possible. The nurses said she really liked to be held, and they were bragging on what a wonderful father Allen was. It surprised us that there were not many other parents visiting in the NICU, especially fathers. Once for about 45 minutes she gazed into my eyes. It was one of our most special times together. When she looked at me, I could see that she was tired. Her eyes had lost some of her spark.
They began the testing for DiGeorge Syndrome on her admission to the hospital and 5 days later, we found out it was positive. That was a big shock. Again, all my hopes and dreams for little Laura began to crumble. She had her surgery on Friday June 14th her 10th day of life. It did not go well and she had to be put on the by-pass (heart lung machine) 3 times because the repairs weren’t working and they had to keep re-doing them. They first tried to reconnect the interruption with a flap using the ductus, but there was too much tension at the site and they had to put her back on the pump and tried a gortex graft. That too proved unsuccessful because it kept collapsing. They put a patch on that graft and that appeared to be adequate. Then the waiting game began. Her prognosis was grim because of the unusually long pump time and complications during surgery. I cannot say how my heart ached for my precious baby.
When she finally came out of surgery after a whole day of waiting, we finally got to see her. She was moved from NICU to PICU after her surgery. She had her own room, and again the visiting hours were liberal. We could stay with her 24 hours a day, and one person could even sleep in the room in a pull out chair. When we first saw her she looked so pale, lifeless and swollen. Allen was very heartbroken to see her like this. I knew how she would look, but it was still a shock. She had wires, tubes and IV’s everywhere. She had chest tubes, drain tubes, a foley catheter, and a pacemaker. There were so many IV pumps and machines at her bedside that it scared me despite the fact that I was used to that type of thing. She had to be on a pacemaker to regulate her heart rate, and a ventilator to breathe for her. She was also on medicine to sedate and paralyze her.
She lived about 24 hours after her surgery. It was the worst 24 hours imaginable. The doctors called it a 24 hour resuscitation because she was max’ed out on all her drugs and had coded 3 times. The prognosis kept getting worse and worse by the hour. We knew to expect bad things during the first 72 hours, but this was even worse than planned. She never had even one stable hour. Because of her DiGeorge, she had major calcium imbalances. She coded twice because of her calcium level was too low despite being on a constant drip. She had about 12 drips going during all of this, but her pressures were never good enough to support her kidneys, etc. Her oxygen saturation was in the 70's and 80's%. She started going into multi-system organ failure and the doctors began telling us that they were at the end of their rope as far as treatment went. We had my family, Allen’s family, and many towns across 3 or 4 states praying for our wonderful little angel.
We asked the doctors about other treatments like the ECHMO pump and dialysis and transplantation but they said she was not a candidate for any of those and she was too sick for them. Her valves didn't appear to be functional enough to keep her alive, and there is no repair for those problems in babies. These doctors were awesome, and I have no doubt that everything possible was done for Laura.
We held her and rocked her for a long time. A chaplain came and baptized her before she died. She was so swollen from the surgery that she didn’t look like our baby at all. Her chest was still open due to all the swelling from surgery. We read to her, sang to her, prayed for her and cried for her. We kept begging her to fight and get better. Finally when I realized how sick she was, I told her that if she felt like she had to go be with Jesus that it was ok and I would understand. I prayed and told God that I would never be bitter towards him if he took my angel. I knew Allen would not be able to tell her the same thing for much longer, finally several hours had passed and I talked to Allen about him telling Laura it was ok to let go if Jesus was calling her. He encouraged her to fight and told her that we really wanted to keep her and care for her, but if she was being called to Heaven she could go if she needed to. We didn’t want her to suffer. Just a short while longer she was taken from us on Sunday June 15th around 9:40 p.m. on her 11th day of life.
I shed most of the rest of my tears that night, and over the next few days. We had a funeral for her, and buried her on Tuesday. At the funeral home almost 200 people came to visit, and I could barely shed a tear. I felt like an idiot with everyone crying around me, and I was just standing there dry-eyed. I did most of my crying with my wonderful family. My friends kept saying, I don’t know how you are going through this, etc.... No one knew what to say or do. Everyone was so helpless and grief stricken. I have about 8 co-workers that are pregnant right now and my best friend (and coworker) delivered her baby 3 weeks before me. We enjoyed our whole pregnancy together. She is so devastated and tells me she feels guilty because she has her baby and I don’t. I'm really thankful I have such a wonderful friend like her.
Now here I am going hour by hour, day by day. Visiting the cemetery and trying to go on. I too am trying to keep busy. I have made a huge scrapbook with everything from a picture of my positive pregnancy test, pictures, cards and keepsakes from my 3 baby showers, her birth, stays in the hospital and death. We have a huge photo album full of her 11 days of photos. Luckily I have about 2 1/2 hours of video footage of her first 6 days of life. I haven’t touched anything in her room. I cannot imagine taking down her nursery or doing anything with her closet full of clothes. We got so many gifts for her and I can’t bear to part with them.
I feel like I'm on display and everyone is watching me to see if I'm taking it ok, or am I grieving too much? Or, not enough? People are asking if my marriage will make it through this? Apparently, they dont know us well. This has brought us closer together. Sometimes, I just don’t know how to act. Nighttime is my worst time. Allen works night shift and I am by myself a lot at night. Sometimes I have to take a sleeping pill, but I don’t want to get dependent on them. Sometimes I have dreams and nightmares about her. I wake up during the night and can't stop thinking about her. I re-live her funeral and death constantly.
Allen was a wonderful father, and he has changed in so many wonderful ways since Laura was born. She gave us so many gifts and I'm so thankful we had her. She was a blessing and a miracle from God. I consider her time here with us a gift. At least I finally got to experience what it is like to be a mother. It is so wonderful. I only hope God will bless us again with another baby. I will be totally paranoid if I do get pregnant again. We have to go through Genetic counseling to be sure that neither of us has DiGeorge. That possibility is remote (only 10% of DiGeorge cases are inherited) but here lately we've been outside the norm on statistics so I haven't relaxed about the idea that we may have more bad news to come. If we do have it, there is a 50% chance of passing it on again. I just can’t think about that right now.
I have such empty arms and I ache to hold my baby. I have such a need to care for and nurture her. My breasts still leak and sometimes I just sit in her nursery and rock. I have nothing to do with all this time off from work on maternity leave. Unfortunately I developed carpal tunnel syndrome really bad during pregnancy in both hands and just had surgery on both of them last week. I have to go back to work on Aug 7th, which is kind of early after surgery. I got off work on maternity leave starting April 4th so I will lose my benefits if I don’t go back by Aug 7th. With all the bills we've started receiving, I have to go back to work even if my hands aren’t healed.
We must learn to go on despite our loss. I search the Internet for people with similar stories and for more information about Laura’s condition. I try to keep myself busy as much as possible to keep my mind off my sorrow. I have found several comforting poems about grief and newborn loss. I have listened to several songs that remind me of Laura. She and I will be together again one day. Until then, she will have to live on in my heart. Some people only dream of angels, but I got to hold one.
Laura and her Daddy - Allen
Laura's Nursery
Links
Congenital Heart Defects Links
http://my.execpc.com/~markc/congring.html
http://members.tripod.com/~Binkygirl/links.html
http://www.congenitalheartdefects.com/resources.html#bereavement
Grief Sites
http://www.bereavedparentsusa.org/
http://www.angels4ever.com/
http://www.mendingbrokenhearts.org/
Interrupted Aortic Arch Links
http://www.cincinnatichildrens.org/Health_Topics/heart-encyclopedia/anomalies/iaa.htm
http://www.emedicine.com/ped/topic2515.htm
http://www.rch.unimelb.edu.au/Cardiology/website/Library/Interrupted_Arch/interrupted_arch.html
http://www.pediatriccardiacinquest.mb.ca/pdf/pcir_chapter02b.pdf
DiGeorge Syndrome Links
http://www.jmfworld.com/html/digeorge_syndrome.html
http://www.ncbi.nlm.nih.gov/disease/DGS.html
http://www.familyvillage.wisc.edu/lib_dig.htm
http://www.nlm.nih.gov/mesh/jablonski/syndromes/syndrome268.html
http://www.geneclinics.org/profiles/22q11deletion/
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This Congenital Heart Disease RingSurf
site belongs to
Laura's Memorial Page.
Click Here To Join The CHD WebringNext
