A Note from Hazel's Mom - 08/29/2017

Hazel is out of surgery and our hearts are crushed.

She indeed has pulmonary arterial hypertension and the heart cath confirmed the

fears from her previous echos. Hazel's heart cath

showed the mean pressures in her lungs are 3 times what they should be. This

causes her right ventricle in her heart to work overtime, and the muscle to

continue to enlarge. She did not respond to increasing her dosage of

sildenafil, and showed almost no change when testing her with oxygen and nitric

oxide. The next step is to start a medication called bosentan, which helps to

decrease pulmonary resistance. This medication is very hard to get approved

from insurance companies due to it being very expensive. We hope to have it in

7 to 10 days but Dr. Fletcher, Hazel's cardiologist said it could take longer.

She will have to undergo testing of her liver monthly to monitor effects that

this drug can cause. If this does not work, the next step will be IV therapies.

Dr. Fletcher is a very straight forward doctor. He told us we are not at a good

point, so he wants to be very aggressive with her therapies. She also has

malacia of the trachea which is where one side of her trachea is not as open as

it should be. Because of this they want to do a sleep study to make sure she is

getting enough oxygen while sleeping. Babies with heart defects are 8 and

1,000, and of those babies, 1% have transposition of the great vessels, and of

those babies, .02% have pulmonary arterial hypertension. This is so rare and

and so few babies have it. They do not know the cause if this, but classify

this as World Health Organization, Group I, caused from her congenital heart


We are starting from square one. We were to scared to ask her survival

rate. We know this is a very scary disease and if we cannot find a therapy that

works, it could be devastating. I don't want to think about devastation. All we

can do is give her the best life, be strong and positive, and pray the doctors

are able to help her. I want her life to be normal. I want her to be able to

walk, go to school, learn to drive, ride horses of course, go to prom, have a

boyfriend, go to college, get married, have kids, and most importantly, be

happy and have a quality of life like anyone else. We will give her so much

love. We have a very long road ahead, and I am scared how we will be able to

juggle work, 2 other kids, and all the doctor appointments she is going to

have. I know we will find a way. I want to thank everyone for their continued

thoughts and prayers. I know so many family and friends are following Hazel's

journey and hurting right along with us. Thank you for loving her and

supporting us.

I know God put her in our arms for a reason, and

even though we don't understand it, we are so proud to be her parents and her

brothers are so in love with her. I pray she will out lives us and modern

medicine will be on her side.

  • The Journey of Hazel Grace Nelson - #HeartofHazel

    “All we can do is give her the best life, be strong and positive, and pray the doctors are able to help her.”

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