Easton's Story

Our Sweet Baby Easton

By: Kelly Creed

           

I vividly remember the morning we had the test that said "positive."  I woke up earlier than usual, (which never happens), but my brain was giddy with anticipation.  I wondered if the faint plus sign I saw on the pregnancy test the day before had been my imagination, which my husband groggily claimed.  Could it have been real?  Knowing that it was unlikely that I had gotten pregnant the month after having a “chemical pregnancy” (or a miscarriage to me), I told myself not to get my hopes up like I did every month.  I knew I had prayed for this more than I had for anything, but I just wasn’t sure I could handle another disappointment. I bravely took the test and held my breath until the 3 minutes were up.  I looked at the test on the side of the sink and it said "pregnant.".  I couldn’t believe it!  I ran to our bedroom to share the news with my husband.  We were so excited and couldn’t go back to sleep before work.

Flash forward and now I am 10 weeks pregnant.  Several tests and two ultrasounds later, with all normal results, we were excitedly approaching the “safe zone” of 12 weeks; however, that safety net was snatched away.  I was getting up to shower for church and when I stood up; it felt as if I were having another miscarriage.  I rushed to the bathroom to confirm what I suspected.  I was in a daze.  I didn’t want to lose this baby too.  We had already told our close family that we were pregnant.  I didn’t want to have to tell them this (we had not shared the previous miscarriage) and wasn’t sure how to tell my husband either. 

I woke Josh up and told him what happened and he suggested I call the helpline at the hospital.  I did, and the doctor told me that if I could wait until Monday, it would be better because if I were miscarrying again, there was nothing they could do.  She said to stay in bed for the day and they would see on Monday.  I lay in bed, crying off and on throughout the day, and Josh lay with me and held me.  We were so sad and worried and prayed that our baby would be okay.

Monday morning finally arrived and we headed to our appointment.  I was nauseous, nervous, and sweating because I wasn’t sure what we would find.  They began the ultrasound and to our amazement, there was a little baby (that looked like a chicken) and we could hear a steady heartbeat.  I began to cry because my prayers had been answered.  There was our baby alive and strong.  The technician continued to take pictures while my husband and I watched in amazement.  We were in love and felt such a relief.  The technician told us that she needed to have the pictures reviewed and the doctor would be in shortly. 

The doctor came into the room and told us that they had found something concerning on the scan.  She showed us the pictures and pointed to a spot on the back of the baby’s neck.  She told us there was fluid built up in a pocket.  We were confused and not comprehending what she was saying.  Didn’t we just see our baby and it looked great and strong?  She couldn’t be talking about our baby!  She took us into her office and drew a picture of what it looked like.  She said it was called a cystic hygroma and it was an indicator of something serious.  We were crying and could not believe this was happening.  We wanted this child so badly, how could this be true?  She could tell we were shocked and kindly took us through the back halls to a genetic counselor.

We were numb as we entered a small office and sat down to talk with the genetic counselor.  We prepared ourselves for the worse.  She began by telling us that we had “options.”  We could always try again for a healthy child.  She never said abortion, so it took me a moment to process what she meant.  Once I understood that she meant we could kill our baby, I kindly informed her that this was a baby, not an old sock, and we would not be “trying again.’’   We loved this child and if God did not want us to have him, God would take him to Heaven.   

She kindly proceeded to tell us that our baby had a 50% chance of having Down Syndrome, Turner Syndrome, or some type of Trisomy.  If I continued to carry this child, I would most likely miscarry again or if I had the baby it would probably die within 24 hours after birth.  We were crushed and devastated.  She continued to tell us that if one of these problems was not the reason for the hygroma, then my husband and I most likely had a genetic disorder we were passing and did not know about.  She told us that they wanted to do a PHISH test and a CVS test, but they would need to take some placenta to do so.  There was a small chance of a miscarriage after the procedure, but I needed to know and prepare myself for what might be.  Also, I didn’t want to keep making babies and then miscarrying them.

We had the procedure done and started the wait.  In 2 days we would know if it were Down's, Turner's, or some sort of Trisomy.  We would also be able to find out what the sex of the baby was.  I carried my phone with me all day and night, and Josh did as well.  I was to call him as soon as I heard something back.  We tried not to worry and to pray for our baby during this time, but I will admit that I was weak and cried many times during the wait.  I was very sad and did not want to lose this baby too.  I was already in love.  As much as I wanted to, I didn’t do a very good job of consoling Josh either because I was doing the best I could to function daily. 

 Finally, the call came on Wednesday afternoon.  The genetic counselor told me that the baby did not have any of the issues that 50% of baby’s with a cystic hygroma have.  I was so relieved I began to cry and was rushing to get off the phone to call Josh.  I just knew that there would not be any problems with this child.  I was so excited and relieved that I forgot I could find out the sex of the baby!  The counselor asked me if I wanted to know, and I told her yes!  I asked her if it was a girl (because Josh was sure it was), and she giggled and said it was a boy.  I laughed and cried at the same time!  I called Josh and told him the news.  He was so elated that he began to cry too.  He also laughed about it being a boy, but as long as he was healthy, he did not care.

            Now we had to wait to see if Easton (we had already chosen a name for each sex) would have any genetic problems that we passed on.  We had a much better chance of this not being the case.  I continued to pray endlessly.  The Lord had given me such a sense of peace, and I just knew that Easton was going to be fine.  It was a long 2 weeks, but we received a call and were told, yet again, that nothing was found.  His DNA was normal.  I wanted to know what we were facing at this point.  The genetic counselor told me that many times when nothing else can be found, a baby with a cystic hygroma has a 50 percent chance of having a heart problem.  On the other hand, when a child was born with a heart problem, only 5 percent of them were not repairable.  This was the first time I was given hope from the doctors that we would have a baby to bring home.  I knew how I felt and that the Lord would take care of our child, but the thought that we had a 95% chance of bringing home a baby was reassuring as well. 

            I had an appointment at 12 weeks and saw the same doctor that told us the news.  She was very kind, had explained everything, and answered all of our questions.  She offered to take me as a patient.  I know this was the Lord working because she also offered to give me a free ultrasound weekly.  I would come in once a week just to be sure the baby still had a heartbeat.  I know this sounds strange, but it was the Lord’s way of helping me get through this.  Knowing that every Tuesday I would get to see and hear my little guy’s heart beat, gave me such relief from the fear and worry I would feel.  Every Tuesday I would go in on edge and leave crying in relief.  The pitter-patter of his heart was the most beautiful sound I had ever heard.

            I went in weekly until week 18, the big ultrasound, which would tell us if his heart was okay and if the hygroma had dissolved.  The day finally arrived, and I was almost sick.  I was anxious, excited, and worried all at the same time.  I just wanted to know that what I felt was true, and that the Lord had healed Easton.  The technician had read our case and apparently my file said that the “fetus may not be alive.”  She asked us were we expecting to see a live baby or if we had been prepared for the worst.  I informed her that I had been coming weekly. I knew that (as of last week) he was still alive and would be on the scan today as well. 

The ultrasound went as normal but this was a level 2 and we could see so much more than I had been seeing the last several weeks.  Our baby was on the screen, squirming and moving around.  I looked for the fluid behind his neck but couldn’t see it.  I asked the technician if it was there and she said she couldn’t see it either. The doctor would have to say for sure.  It was a long ultrasound, but we were mesmerized to see our sweet baby on the screen.  Finally the doctor came in and told us that everything looked good.  There was no hygroma and Easton’s heart looked great!  We were so relieved and excited to know that the Lord had healed our sweet boy!

The rest of my pregnancy was fairly uneventful.  I continued to pray for my sweet baby daily and was reassured every time I went in for a check up.  I wanted to wait until he arrived safely to share his story.  I promised the Lord that I would.  Easton arrived on September 25, 2012 at 5:27 P.M..  He weighed 6 pounds 2 ounces and was 19 inches long.  He is absolutely perfect.  There were no signs of the cystic hygroma, heart problems, or anything else. 

I wanted to share our story, hoping that it may help others who have a baby diagnosed with a cystic hygroma.  There is hope, through God all things can happen, and your child deserves a chance.  Yes, a hygroma can be an indicator that something is wrong, but sometimes they happen for no reason.  Doctors do not know all of the reasons hygromas form and because many parents decide not to have their babies the statistics don’t look good.  However, please remember that there is hope! I am so thankful that my husband and I both felt that “starting over” was not an option.  If we had, we would have missed out on an amazing, wonderful gift from God!  

And this is our confidence, that if we pray according to His will, He will hear us, and give us what we ask for, because our desires are in agreement with His thoughts for us. (1 John 5:14-15)

I am so grateful for Kelly and her story of hope! While we live with delusions of control in life, the reality is...we have none. The only thing we can do is cling to the One who loves us and understands our pain and trials. No matter how educated we are as humans, no one knows anything for certain when it comes to mortality. Since my child's miracle birth, I have met so many amazing people and heard even more amazing stories. While God has chosen to heal some babies in Heaven rather than on Earth, all of the mothers have one thing in common- they didn't give up on their child! They held on to a chance because they deserved it and so did their child. They realized that their child's life, no matter how long or how brief, was filled with a purpose. Don't take the chance of missing out on a sweet baby like Easton! Kelly, thank you so much for keeping your promise to the Lord and sharing your story! I know it will give hope and peace to many that come across this site! God bless! M

More Cystic Hygroma Success Stories

From Lindsay Taylor~

My son, Gavin was diagnosed with fetal cystic hygromas (one on each side of his neck, each nearly as large as his head) at a 14-week ultrasound. At 20 weeks, the hygromas had completely resolved, but we were told there was a 75% or greater chance that he had Down's syndrome (since he was a male and therefore couldn't have Turner's) due to the hygromas and other Down's markers that were positive. We were encouraged to consider abortion but went ahead with an amnio & found out that his chromosomes were completely normal. We were still told that he could develop hydrops, possibly leading to organ failure and death. At around 30 weeks, it was discovered that I had low fluid (olighydramnios), which is associated with hydrops. We had to have serial Level II ultrasounds and fetal nonstress testing for the remainder of the pregnancy. Our son was born on July 16, 2007, COMPLETELY NORMAL AND PERFECT with NO signs whatsoever that anything was ever wrong. He is 4 years old now and is the absolute light of our life. I am horrified when I think that my doctor thought abortion was the best choice for us. If you receive this diagnosis, have hope. Don't give up on your baby until you have definite answers.


From Jenny Walker~
My son Kieron was born in November 1993, he had a large Cystic Hygrome on both sides of his neck, floor of his mouth & tongue involvement, when he was 15 months old he had a Tracky inserted for his airway, around 2 1/2 doctors told us that if he didn't have surgery to reduce the swelling around his neck and airway & the Hygroma grew he wouldn't have an airway left, he has 10 1/2 hours of surgery (de-bulking) 2 weeks before his 3rd birthday, tracky was removed 3 months later after laser surgery on his airway, Kieron hasn't looked back since. He plays hockey at a representative level, he is in year 12 at school, will be 18 in November this year. We have always treated him as any normal child, wouldn't ever wrap him in cotton, we let him live a normal life as possible. Kieron has alway's been a happy child and as he has gotten older has developed a very quick wit and is very funny at time. Hope my short history of Kieron can give hope to other children with Cystic Hygrome.....

From Cari Brooks-Allen~
 
Hi!! I want to share my story. I have a healthy 3 year old girl, then had 2 miscarriages (due to genetics), and a healthy pregnacy, but a 3 mo old girl with a cystic hygroma. Hers is under her arm. I just want everyone to know there can be a miracle and these babies can be born. At my 20 week ultrasound the tech couldn't get good pics of the heart, so they did a routine US at my next appt. 24 week US showed that there was fluid under the baby's arm. My mid-wife reffered me to a specialist, she had never seen this before. A week later I got to see the specialist, he said it was a cystic hygroma and then told me the sex of the baby, A Girl. (we wanted to be surpised) but due to the chance of Turner's Sydrome he told us. I was worried, but did research on both conditions. Very depressing, although the Dr never told us about her not surviving. I just looked on through all the bad things on the internet, and figured it was just for severe cases, and not for me. I went on having a perfect pregnancy, extra ultrasounds, and Cardio appts. Just a busy pregnancy. Had a perfect birth and a perfect baby. She does have the cystic hygroma, but is otherwise healthy, no chromosomal abnormalities. She had an MRI at 4 weeks old, and all went well. She will have surgery when she is 6-8 months old. We are just takig the time before that to enjoy the summer.


I just am very happy that I am blessed with such a miracle baby, as I did not know the stats about cystic hygromas and the survival of the pregnancy. I am vey greatful!!!

Links to Cystic Hygroma Success Stories!

The following links are success stories of babies with cystic hygroma. As I have said before, during my own pregnancy, it was very difficult to find anything positive or uplifting online. While the awful can happen, so can the awesome. Have hope in Christ. Please check out these links!




https://www.facebook.com/video/video.php?v=631675006312

http://community.babycenter.com/post/a22080823/finally....my_success_story

http://www.benotafraid.net/story.asp?id=102

http://www.helium.com/items/1103331-turners-syndrome-hydrops-cystic-hygroma-miracle-baby

http://community.babycenter.com/post/a15060085/lets_post_our_ch_success_stories_for_all_those_that_need_hope?cpg=1&csi=2071507502&pd=-1

Fetal Cystic Hygroma

In Avery's case, the very large cystic hygroma was found at 18 weeks gestation, which means it was very unlikely to resolve itself. It was also septated. Fetal Hydrops would have been the likely result. The reason her survival rate was so very low also had to do with kidney, heart, and bowel problems in utero along with her Turner's. The Journal of Clinical Endocrinology & Metabolism states the following: "It has been estimated that only about 1% of 45X fetuses survive to term and that as many as 10% of spontaneous miscarriages have a 45X karyotype." (45X refers to Turner's Syndrome)


Definition: the term "hygroma" means moist tumor. cystic hygromas are anomalies of the lymphatic system characterized by single or multiple cysts within the soft tissues, usually involving the neck.

From: Office of Rare Diseases (ORD) of the National Institutes of Health (NIH:
Fetal cystic hygroma is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that Fetal cystic hygroma, or a subtype of Fetal cystic hygroma, affects less than 200,000 people in the US population.




This information taken from the following:

Department of Human Genetics
Division of Medical Genetics
www.genetics.emory.edu



Cystic hygromas are fluid-filled sacs that result from a blockage in the lymphatic system. The lymphatic system is a network of vessels that maintains fluids in the blood, as well as transports fats and immune system cells. Cystic hygromas are single or multiple cysts found mostly in the neck region. A cystic hygroma can be present as a birth defect (congenital) or develop at any time during a person’s life. A cystic hygroma in a developing baby can progress to hydrops (an excess amount of fluid in the body) and eventually fetal death. Some cases of congenital cystic hygromas resolve leading to webbed neck, edema (swelling), and a lymphangioma (a benign yellowish-tan tumor on the skin composed of swollen lymph vessels). In other instances the hygroma can progress in size to become larger than the fetus.
Cystic hygromas occur in approximately 1% of fetuses between weeks 9 and 16 of pregnancy

Causes:
Cystic hygromas can occur as an isolated finding or in association with other birth defect as part of a syndrome. They result from environmental factors, genetic factors, or unknown factors.

Environmental causes for cystic hygroma include:
• Maternal viral infections, such as Parvovirus of Fifth’s disease
• Maternal substance abuse, such as abuse of alcohol

Genetic syndromes with cystic hygroma as a clinical feature:
• The majority of prenatally diagnosed cystic hygromas are associated with Turner syndrome,a chromosome abnormality in which a female has only one X chromosome instead of two.
• Chromosome abnormalities such as trisomies 13, 18, and 21
• Noonan syndrome
The pattern of inheritance for these syndromes varies depending upon the specific syndrome.Isolated cystic hygroma can be inherited as an autosomal recessive disorder for which parents are “silent” carriers. Finally, a cystic hygroma can occur from an unknown cause.

Testing:
Because the risk for a chromosome abnormality approaches 50% when a cystic hygroma is found prenatally, amniocentesis or CVS (chorionic villus sampling) can be performed to diagnose these conditions. If a genetic syndrome is suspected, test availability depends on the specific disorder. Maternal viral studies may also be considered if hydrops is present or maternal exposure can be
documented.

Work up for a prenatally diagnosed cystic hygroma includes:
• A detailed ultrasound, including fetal echocardiogram, to look for other anomalies that may indicate the cause for the hygroma
• A complete family history to determine if testing is indicated for hereditary syndromes.
• Amniocentesis or CVS to look for chromosome abnormalities or a specific genetic syndrome. Viral studies on amniotic fluid can be performed if indicated by the presence of hydrops.(Maternal serum screening does not help in determining the prognosis for a fetus with a cystic hygroma.)
• Periodic ultrasound evaluations are necessary to look for resolution of the cystic hygroma and/or development of other anomalies or fetal hydrops.

In the event of a fetal demise, a complete post-mortem exam (autopsy) is helpful to determine risks to future pregnancies.

Prognosis:
In some situations, a cystic hygroma can be present in a healthy baby. If a chromosome abnormality is not found in the fetus, the outcome is generally better than for those who do have a chromosome abnormality. If a cystic hygroma is an isolated finding that resolves around 18-20 weeks gestation and the fetus has normal chromosomes, the outcome is good for 54-80% of these cases. In cases in which an isolated cystic hygroma does not resolve by 20 weeks gestation, 2-9% have a good
outcome. Overall, there is generally a poor prognosis associated with the prenatal finding of cystic hygroma. Studies have indicated that smaller cystic hygromas are more likely to resolve. Oligohydramnios (not enough amniotic fluid) or polyhydramnios (too much amniotic fluid) predicts a poor outcome. Hydrops occurs 22-76% of the time with a cystic hygroma and is almost always associated with miscarriage or fetal death.

Treatment:
A baby with a prenatally diagnosed cystic hygroma should be delivered in a major medical center equipped to deal with neonatal complications. An obstetrician usually decides the method of delivery. If the cystic hygroma is large, a cesarean section may be performed. After birth, infants with persistent cystic hygroma must be monitored for airway obstruction. A thin needle may be used to reduce the volume of the cystic hygroma to prevent facial deformities and airway obstruction. Close observation of the baby by a neonatalogist after birth is recommended.If resolution of the cystic hygroma does not occur before birth, a pediatric surgeon should be
consulted.Cystic hygromas that develop in the third trimester (after thirty weeks gestation) or in the postnatal period are usually not associated with chromosome abnormalities. There is a chance of recurrence after surgical removal of the cystic hygroma. The chance of recurrence depends on the extent of the cystic hygroma and whether the wall of the cyst was able to be completely removed.

Here is another study I found online:
Abstract
Fetal cystic hygromas are congenital malformations of the lymphatic system appearing as single or multiloculated fluid-filled cavities, most often about the neck. They are thought to arise from failure of the lymphatic system to communicate with the venous system in the neck. They often progress to hydrops and cause fetal death. In an effort to delineate the cause and natural history of this disorder, we studied 15 consecutive cases of nuchal hygroma detected prenatally by ultrasound. None of the 15fetuses ultimately survived.
Thirteen fetuses were hydropic at the time of diagnosis; nine either died or were bradycardic in utero before abortion; one died a few hours after birth. Eleven fetuses (73 per cent) had karyotypes consistent with Turner's syndrome, and an additional fetus with female genitalia had a 46,XY karyotype. Three fetuses had 46,XX karyotypes, and two of these had multiple malformations.
When a hygroma is detected during fetal life, careful sonographic examination of the entire fetus, determination of the fetal karyotype, and an evaluation of the family history are indicated. (N Engl J Med 1983; 309:822–5.)
SOURCE INFORMATION
From the Departments of Obstetrics and Gynecology, Human Genetics, and Pathology, Yale–New Haven Medical Center. Address reprint requests to Dr. Chervenak at Mount Sinai School of Medicine, Department of Obstetrics and Gynecology, 1 Gustave Levy Pl., New York, NY 10029.