Beat On for Brinley

On January 11th, we found out we were pregnant and could not have been happier. About two weeks later, I began hemorrhaging and was taken to the hospital. My HCG levels were very low and we were told that the baby would not survive! Zack and I went home that night completely devastated and both dropped to our knees and prayed! About 12 weeks pregnant, we had a checkup where we found out my HCG levels were in the ten of thousands versus hundreds. They said it was a miracle! Throughout the next couple weeks we were so excited and couldnt stop picturing our life with this little baby. At 16 weeks, they informed Us it was a GIRL!! We immediately agreed upon the name Brinley Nicole Rosthauser! The next couple weeks were spent celebrating and decorating her room. We weren't ready for what we were about to hear at our 22 week routine anatomy scan at MFM. After many doctors came in and out of the room, we were sat down and told our little girl had congentital heart defects and may not make it to term. The doctor embraced us and we all shed some tears.  After days of constant crying and sadness, we were sent to a team of doctors who specialize in CHD. They did her first fetal echo and discovered she had multiple heart defects. Her first and most severe is hypo plastic left heart syndrome(HLHS) is a rare congenital heart defect in which the left ventricle of the heart is severely underdeveloped. This affects normal blood flow and especially blood flow to the heart. She also has aortic stenosis where the aorta has to be artificially developed in her first open heart surgery and they will attach the aorta to the pulmonary valve. She also has ventricular septum defects, which are fairly common. This was devastating news to our family and friends! They informed us and almost insisted on terminating the pregnancy which was not even an option in our minds. They informed us that even if she survives the first surgery she may need liver, lung or even heart transplants in her lifetime. As you can imagine, we never expected any of this but our sadness soon turned to fight. If our little girl can fight all the odds, then so can we. The plan at 26 weeks was to deliver at CHOP and Brinley would be stabilized after birth and brought to the cardiac intensive care unit. As of June 23rd, 2014 brinley is 3 pounds and 15.5 inches long. The rest of her body is growing and is normal. They also informed us in this same meeting at CHOP that her case has now gone from moderate to severe hypoplastic and will no longer be able to salvage the left ventricle.

UPDATE:
The pregnancy continued along and Sam was checked on every other day to make sure the pregnancy was progressing and there were no other setbacks.
One day while Zack was at work, I knew something wasn't right. Brinley normally a kick boxer in training, hadn't move all day long. We headed to the hospital and we were terrified. Upon arrival, they found out Brinley was declining with every contraction. So Brinley was born at 10:11 am on August 14th 2014 by emergency caesarean section at exactly 37 weeks. She weighed albs 9oz and was 17 inches long. Nice and big for a HLHS baby! She had to be resuscitated at birth for over a minute and had to stay on BiPap. The next couple of days were rough she had sleep apnea episodes. At 5 days old, the night before her open heart surgery, we found out she was septic but her platelets were in the 14,000. At six days old we found out she had an infection that could have turned into meningitis. Also, the next day we found out she had autoimmune throbocytopenia. She had 9 platelet transfusions in the first month and 4 red blood cell transfusions. At 11 days old, at albs 11oz she underwent open heart surgery which is called the norwood. She was in the hospital until 38 days old, and then we FINALLY got to take her home!!! She been in and out of the hospital since then and was brought back last time by a cyanotic episode. The scheduled an emergency surgery for a few days later and on December 8th, 2014 age will have her Glenn open heart surgery.

Brinleys Team at CHOP discovered that her heart was too small to do the Glenn so they attempted to Cath her heart to buy her more time and send the family home for her first holidays. The cath attempt failed and the team had to move forward for the Glenn.  They knew it would be difficult, but I dont think anybody expected Brinley to go through what she is going through and continue to fight so hard to get better.  The surgery left Brinley completely dependent on life support the ECHMO machines are doing the work for her heart and lungs, her chest and heart were left open covered by a yellow cloth.  Brinley is such a fighter and is already  breathing over the machines they have weaned her and even tried to bring her off of the support, however the attempt was unsuccessful and Brinley remains on life support.  Shes has been having truoble with bleeding and has had to recieve more transfusions, however she gives signs that she is NOT done fighting yet, shes opened her eyes held her Mommy and Daddies hand.  

Brinley also has Jacobsens Syndrome, which is an 11q deletion.

She has brought such joy to our lives we welcome positive thoughts and prayers! Thank you for walking this journey with us.

Sam, Zack & Brinley


Im asking that you help this family by praying with us for Brinley to get better, if you can give a monetary donation to help them cover their expenses, and/ or a redcross donation to Brinley.  If you would like to donate blood, plasma, platelets, you can go to your local Red Cross. They said you can donate them directly to Brinley if you'd like. They have to be screened and all first. We appreciate anyone that donates blood to anyone though. It is a very selfless thing. We thank you all for your love, prayers and support.

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Organizer

Tara Capriotti 
Organizer
Bensalem Township, PA
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