Rh Disease

A Little Background


I have wanted to write about this topic for a long time. However, every time I would sit down and write about it, I couldn't get through it without crying and I would stop. I believe that I am finally at a place where I can share our story with the world. Maybe it will help some other parent, somewhere out there, going through this exact same thing.

The day was June 17th, 2006. It was hot and I was eight and a half months pregnant with our second son. He was due on July 13th and that date couldn't come fast enough. I had just worked eight, long, grueling hours on my feet. I put my feet in the wading pool for some relief. I felt like this pregnancy was going to kill me before it was over.

I was so large that you thought I was going to have twins. My husband was tying my shoes by four months! I was up to the doctor's twice a week because I didn't feel the baby move. I was so uncomfortable all of the time. I am sure they were sick of seeing me up there. I was sure that there was something wrong, but I was always assured that all was well. I should take it easy and rest. Rest? Ha! Have they ever been pregnant?

On June 17th, our whole lives changed and to this day I still cannot recall of the details. Standing in the wading pool, I felt a wetness between my legs. Panic surged through me. I went inside and to the bathroom. Yup, there was wetness. My heart skipped a beat. He was early. I yelled for my husband and we were off for the hospital.

After a whole lot of tests and about 24 hours later, we were told the worst news of our lives: Our son was in severe danger; he had Fetal Hydrops due to Rh Incompatibility Disease. His heart rate was declining and he was showing severe signs of stress. He needed to be delivered right away, but there was a catch. It could not be done at the hospital I was at. I had to be transferred to another hospital, an hour away, to have an emergency c-section. He would not survive a natural birth and he may not survive at all.

Our son 9 hours after birth

Rh Incompatibilty Disease

Rh Incompatibility Disease is becoming more and more rare, but it still affects about 1,000 babies each year. And while the prognosis of a baby with Rh disease has historically been poor, advancements in technology and medicine have allowed for a more positive outcome, depending on the severity of the situation.

Everyone has either a positive or a negative blood type. This positive or negative assignment is referred to as the Rh factor. It means that your blood is either positive or negative for the Rh protein. For most people, their Rh factor will never play a role in their lives. However, if a Rh negative woman, and a Rh positive man produce a child, there may be complications, but rarely during the first pregnancy.

If a Rh positive man and a Rh negative woman have a child that is also Rh negative; there will be no resulting issues. However, if the baby is Rh positive and some of that Rh positive blood enters her bloodstream, antibodies are made by her body to attack the foreign blood. That pregnancy will rarely be affected, but any pregnancies after that will be.

If that woman chooses to have another child, and that child is also Rh positive, the antibodies in her blood will attack the red blood cells of the unborn baby. This kills the red blood cells of the baby and cause anemia in the baby. Severe, untreated anemia is fatal.

In the early 1980s a shot was developed that was given to Rh negative woman that prevented their bodies from developing antibodies. The RhoGam shot is given to every woman, who is Rh negative, after she has had a miscarriage, an abortion, or given birth. This shot has severely decreased the number of babies that are affected with this disease.

Fetal Hydrops is severe anemia. It means that the baby has developed anemia to the point of fluid filling different cavities in the body, more specifically, the heart, the lungs, and the abdomen. The red blood cells of the baby are almost completely destroyed and the blood is toxic to the baby. Death soon follows a baby that has Fetal Hydrops if treatment does not take place. Fetal Hydrops can be caused by conditions other than Rh Incompatibility Disease.

One Week After Birth...

How it Affected Us

After arriving at the other hospital we were told in detail about our son's condition. The doctor told us that will the severity of his condition, his chance of survival, with treatment, was about 10%. 10%. Small odds for a small baby. The irony of life hit me at that moment. My life has never been the same.

After the delivery, it was nine hours before I saw my baby. My doctor prepared me for the first sight of him so that I would not be shocked. He had to have a ventilator to breath because his lungs were full of fluid. He could not breath on his own and right now needed 100% oxygen from the machine. He was in an enclosed bassinet with arm openings but he advised me to not touch him because he was not tolerating touch and it made his stats jump.

He would have a mask on to shield his eyes from the lights that surrounded him. His blood had dangerous amount of billirubin in it and the lights were being used to break it down because his liver was not functioning properly due to damage. The longer the billrubin was in the blood, the more damaging it was to his body and his brain. They had given him a complete exchange transfusion so that his body did not have so much toxic blood. He was smaller in size because they removed about 3 ½ pounds of fluid from his body. His weight was just about 4 pounds now. There would be a lot of tubes and wires. He would be in only a diaper so that the lights would have maximum effect. He would be yellow because severe jaundice set in within hours of birth.

So, I was prepared for the first sight of my baby, but I was not prepared for my very first visit to the NICU. I had to sign in and then wash my hands for three minutes before entering. I was wheeled into a hallway that had rooms off of it. The rooms were filled with incubators. In the incubators were babies. Little tiny babies, and big machines that kept them alive. Next to the babies were parents. Helpless parents waiting for a miracle.

He spent a month in the NICU and it is not a place that I wish any parent to be, for any reason. But I am grateful dedication and support of the hospital staff, especially the NICU nurses. He had many ups and downs during his stay. But he made it! He beat 10% odds. He continues to work really hard for things that come easily to other children. He is deaf and developmentally delayed 18 months but he is alive. In the end that is all that matters.

(I am going to write a hub about his treatment while in the NICU and his development in my Parenting a Deaf Child Hub in the future...please look for it.)

A Brief note from me....

  If I have learned one thing during this whole period of time it is to trust your gut. If you know something isn't right, don't let doctors tell you that everything is okay...it may not be. YOU are the only person that knows your body and only YOU know when something isn't right. I knew something was wrong and I listened to the doctor instead of my gut....look what happened to us. Don't say it couldn't because it could. Doctors are human and make mistakes too.

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Comments 11 comments

Ohma profile image

Ohma 6 years ago

Wow, You have got a real little fighter on your hands. I think it is sad that all of your family is having to cope with this. I think from his start in life and his determination to be here that boy of yours will run the world someday.

Bless all of you!

Veronica Allen profile image

Veronica Allen 6 years ago from Georgia

I can't imagine what you went through. I was in tears reading this. I totally agree with you on the point that you have to listen to and trust your gut. Your little one is sure a fighter. To beat an odd like 10% is rare for an adult, how much more so for an infant. Thank you for sharing your story with us.

Moulik Mistry profile image

Moulik Mistry 6 years ago from Burdwan, West Bengal, India

I knew it is a very complicated disease and reading your wonderful hub I became more clear about it, thank you so much...

Dale Mazurek profile image

Dale Mazurek 6 years ago from Canada

What a hub. How terrible it must have been to see your little baby like that.

I am so happy you guys have been able to move forward.

The hub definatly has a place on my blog.

The link to my blog can be found near the bottom of my profile page.



ChristinaScibona profile image

ChristinaScibona 6 years ago from The Heart of the Finger Lakes Author

Thank you Dale I am honored to be a part of your blog:)

6 years ago

hi christina!

read ur story.cried.......i am a mother with Rh incompatibility.me an my husband took a decision of terminating my 2nd preg due to impending hydrops in the foetus.the desire of having a second baby still remains.......difficult to deal with it.......

ChristinaScibona profile image

ChristinaScibona 6 years ago from The Heart of the Finger Lakes Author

Z- In all my time on the Internet researching my son's condition, I didn't ever find anyone that has been through it too. FINALLY!!!! LOL Thank you for your comment and reading my writing. We were told that we could not have any more kids because furture babies would be worse than him...I don't know how that is possible but I would not want to go through that again. I will be happy with my boys :)

Ashleigh 5 years ago

I just want to say thank you so much for writing this article, you did exactly what you intended to do by giving parents hope. I developed the same condition with my first child and her prognosis was bad or unknown at best. Against all odds I gave birth to a healthy baby girl. I am currently pregnant again and to know I am not alone is a comfort I cannot explain. There were so many things you said at the begining of your article that I can strongly relate to. Every other information I have read states that the condition causes no symptoms for the mother but I too was in pain (even my finger joints hurt constantly), I gained went from 125 lbs to 150 lbs in my last trimester, went into preterm labor twice and kept telling my doctors I felt something was wrong. Fortunately this time around I have found a team of doctors who have experience with this and I hope to give my baby the best possible chance to be healthy. God bless you and that amazing little miracle!

kacostello 4 years ago

Christina, I too was affected by RH Incompatibility Disease. My second child had to have three intrauterine blood transfusions during my pregnancy to avoid getting to the point of Fetal Hydrops. My question to you is, how did your doctors not know this was going on? My first prenatal blood test picked up the antibodies and they started monitoring with specialized ultrasound and treating the anemia inutero via blood transfusions to the baby. I'd be interested to know why they didn't detect the antibodies in your initial prenatal blood test.

Ciel Clark profile image

Ciel Clark 4 years ago from USA

Christina, thank you for sharing your story, and best wishes to your son.

swaggester 4 years ago

dangg that's sad .. god bless .

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