MAIDEN FAMILY 
Norman, Jamie, Trinity and Jonathan 

Having children with lymphedema has affected our lives tremendously, we have suffered as parents emotionally, physically, and financially.  We have taken our children to three different children’s hospitals, numerous doctors’ appointments and countless visits for physical therapy.  Even through all the stress and feeling so helpless and alone, we have experienced pure love and joy with our children as well.  Their smiles keep us going another day and we are thankful for that.

  
Trinity was born on April 23, 2001.  They did not know of Trinity’s condition before she was born, so it was a big shock.  We weren’t prepared.  I don’t know if anyone is ever prepared to hear that something is wrong with their child.  Trinity weighed 10 pounds 5 ounces and was blue and not breathing.  She was rushed to a nearby children’s hospital where she spent the next 27 days.  

It was torture sitting in my hospital room listing to other new baby’s cry, when Trinity was miles away from me.  Trinity was approximately two weeks old when she was diagnosed with lymphedema.  I had never heard of this word, but when they showed us a picture of someone with lymphedema, I was devastated.  The day she was born, the doctors told us the swelling would be gone within 24 hours, now they told us it would be a lifelong condition. 

  
Thinking back, I remember the first day the children’s hospital had wrapped her legs.  First of all, they had wrapped Trinity extremely tight in regular ace bandages; she cried all day.  She must have been in extreme pain, but they just kept sedating her.  The following day, they unwrapped one leg and it looked almost perfect, I was so excited!  When I asked how long it would stay that way, I was told that within the hour, it would start swelling back, our dreams had been shattered.  After a few days of ace wrapping, she started experiencing skin breakdown on her ankles, so they stopped the wrapping until we could go to a therapist who was certified in lymphedema therapy (both of her ankles are still scared from that experience).

  
Trinity started therapy at one month of age.  After a few weeks, her legs were almost normal size.  The therapist was great and helped to answer any questions that we had, however, going to therapy was extremely stressful for us.  Our days consisted of driving  an hour to the Therapy Center, approximately 2 hours for therapy, and an hour drive back home.  Spending 4 hours away everyday for weeks was very hard and tiring for us with a new born.  It was mentally tough to watch Trinity cry as she was being wrapped and the sight of our precious baby resembling a mummy was horrible!  Everywhere we went, people would stare at her or ask questions about the wrapping.  What is wrong with her?  Did she undergo surgery?  Was she burned?  I think some people even thought she had been abused.  I didn’t know how nosy and rude complete strangers could be.  Our first year was so stressful, it took a toll on our marriage.  I went back to work only part time so I could be home to help wrap Trinity before Norman left for work; we only saw each other for about an hour each day and that was spent wrapping her.  Some days were easier than others when she would just sleep through the wrapping, then we had the days that she would just kick and cry the whole time.

  
When Trinity was about 10 months old, we decided to get an appointment with a genetics specialist.  Norman and I were thinking of possibly having more children and we wanted to see if her condition could be genetic.  A few days before our appointment, the genetic counselor called to tell us that he was canceling our appointment because her lymphedema could not be genetic.  I was so angry!  I then proceeded to tell him of some of the genes I had read about that were responsible for some types of lymphedema and that, yes, it could be genetic.  I demanded to see the doctor.  I came prepared with a stack of papers that I had printed off the Internet with all the information highlighted.  Pretty much the only thing they told us that day was that our best bet would be for some celebrity’s child to be born with lymphedema and they would donate millions of dollars to research.  We were told to check back with them every two years.  That was a waste of a co-pay!  They did, however, send us a summary of our visit a few months later.  I was amazed to see that it pretty much summarized the information I had brought to them – just retyped.

  
Sometimes it takes awhile to find a good doctor.  As Trinity grew, we had a lot of concerns.  Would she walk?  Well, of course, she did; she started walking at 13 months, but she does have trouble with wanting to walk on her toes.  I think it is related to the bandaging.  Also, a lot of nights she will wake up screaming that her legs are hurting and we will try to loosen her wraps.  We can’t leave her overnight with anyone because of the bandaging. 

  
Trinity got her first pair of compression garments that fit well at 1 year of age.  My main complaint about the garments is the expense and the wait from the time you measure until you receive the garment; we have waited from 3 to 9 months for a single pair.  Children are really rough on them and outgrow them fast.  Also, we have never been able to get 2 pair at the same time, so going through potty training stage was horrible.  It is a wonder they didn’t fall apart from all the washings.  Also, it takes great skill to put them on; you really can’t just wake up and go. 

  
Another thing that most parents take for granted is finding shoes to fit that look somewhat stylish.  That is still an issue today and dress shoes are almost out of the question.

  
After years of debating, we decided to have another child.  We were so excited that after just a few months of trying, we were pregnant.  This time, I went to a perinatologist who specialized in high-risk pregnancies.  At 17 weeks, we were told that it was a boy and also that swelling was noted in the lower extremities.  It was bitter sweet.  During my next ultrasound (20 weeks), they noticed some swelling all through his body and we were sent to another specialist who dealt only with birth defects and fetal abnormalities.  The doctor told me that his swelling did not look to be any worse than Trinity’s.  So we prepared for his birth.  I would have a C-section to prevent further complications.  I would also deliver in the hospital that has a tunnel to the children’s hospital so I wouldn’t have to be so far away. 

  
Jonathan was born on December 28 and weighed 9 pounds 13 ounces.  Congenital lymphedema was noted with swelling in his legs and genitals.  At 4 months of age, he started passing blood in his stool and was sent to the ER.  They decided to put him on the progestimil formula with MCT oil.  He has done great with that.  We have held off wrapping him, but have started physical therapy.  I have enjoyed our time together not having to rush everywhere.  It’s nice just cuddling him and watching him be a baby.  I felt I was cheated out of that time with Trinity.  Time flies, and before you know it, they are growing up.  Trinity will be starting school and I worry about her self-esteem.  Some children are already asking questions, but she doesn’t seem to notice.  We have tried to keep her life as normal as possible and have involved her in many activities including Tap and Ballet.  She has even been in beauty pageants and Trinity hopes to play soccer.

  
What I would like to see happen is for more doctors to become interested in, and educated in the field of lymphology, so that my children and others are not treated as an experiment, but rather, receive the proper care they deserve.  I hope, in the near future, there will be a cure for lymphedema – not just for my children, but for the generations to come.  All we can do is pray that God gives us the strength to endure one more day.