14th October 2022

With the Love and Mercy of God  and the angelic work of our Surgeon Dr. Guido Michielon,  Nurses and Doctors `along with the kindness, prayers and support  contributed by every one  Baby Dorothea has been granted a miracle.  She is Alive, she is joyful so happy  truly amazing living up to her name... Dorothea is a Gift From God. 

The battle is far from over baby Dorothea needs a very complex Open Heart Surgery to keep this Miracle Alive which we will detail at the end. But first this our story in full:

4 months ago, pre diagnosed with Hypoplastic Left Heart Syndrome (missing Left side of the heart!) we faced a catastrophic birth riddled with complications, Dorothea faced a 5-20% chance of survival at birth.We needed $3.2 Million to get to the US for in Utero intervention to have any chance of survival. 

We fell well short of our raise target, with very little time left and no hospital or surgeon who was willing to face this monster of a surgery  to save Dorothea's life at no cost.

Distraught and devastated facing losing our baby we loved so much, a voice told us to fight on and not give up, to look for a solution closer to home. I was reluctant since we had already exhausted our option, but this voice was loud and adamant so I appeased and to our disbelief we stumbled on to a Facebook  posts by families that were praising and honouring Guido Michielon an Italian UK surgeon . were astonished that he had tremendous expertise in the Norwood surgery and complex against all odds mission impossible surgeries.  We had a zoom we pleaded for help to save Dorothea's life. Dr Guido quickly sent us to wonder Professor Carvalho a neonatal Cardiologist at the Royal Brompton Hospital and with a full picture of the complexity and extremely high risk surgery he agreed to help and could do it via the NHS at no cost.

Thanks to your contributions and the help of the Tree of Hope we were able to relocate our family to London within blocks of the Royal Brompton Hospital embark on this journey and be there, every step of the way with baby Dorothea. On July 7th 2022, at 7am full of love and faith we were checked in to Chelease Westminister Hospital for the planned birth of Baby Dorothea.

Baby Dorothea was expected to be very unwell at birth, with lungs flooded unable to breathe.The Royal Brompton sent a team of Heart Surgeons led by Professor Fraisse to be present at the birth ready to perform emergency surgery to stabilise Baby Dorothea before transport to the Royal Brompton Hospital.

As we prepared for birth we were scared, I had a flood of never ending tears but Zofia was brave and demonstrated the strength of armies prayed, we held each other close and prayed, pleaded for a miracle.

As the surgeons started the C-Section, a platoon of surgeons and nurses were at the ready re resuscitate and operate on her heart to stabilise Baby Dorothea. As I heard "OK here we go pulling baby out" I peaked over the curtain and saw Baby Dorothea, heard a small cry and a full head of hair and just yelled in excitement. Zofia started calling at Dorothea we chanted support and strength telling her we loved her as she was being examined by the Heart surgeons. They worked furiously placing a mask on her, weighing her and doing an echo scan on her heart. Surgeons gathered around a screen nurses and doctors exchanging orders and information working over our daughter. As planned I barged in with the Hospital priest and and with Zofia still being closed up by surgeons we witnessed Baby Dorothea be Baptised whilst being scanned by surgeon. I could see the lead surgeon scratching his head and doctors talking, there still was no surgery taking place we feared the worse. Eventually Professor Fraisse walked over to us... he was confused, he could not understand why or how, but there were 3 potentially 4 new veins that were draining the lungs, Baby Dorothea's anatomy had changed and that there was no need to perform emergency heart surgery to stabilise Baby Dorothea and she was rushed to the ICU unit where she was stabilised and moved to the PICU unit at Royal Brompton Hospital by the CATS ambulance.

We had 5 wonderful days and nights with Dorothea at PICU, we enjoyed every second together in leu of the surgery that was to come, we just focused on Love and faith. We placed small statues of Lourdes, Fatima,  Pope John Paul II, Rosary and prayer cards.

On the 12th of July on the eve of her Norwood surgery, we were called to a meeting with the Hospital executives and the surgeon, what we thought was a meeting to discuss the surgery. To our shock it was a meeting to inform us that Dorothea's surgery was cancelled, the risk was too high 75%+, and that there was nothing that could be done and we should consider compassionate care, palliative, to pull her medication and air and let he pass away. Our surgeon still believed he could help, but he did not have the support from  the wider Evelina team  (Evelina Hospital acquired the Royal Brompton) to get approval for the surgery. We pleaded for executives to please consider the power of love and possibility of a miracle, but to no avail.

There was no way we were going to give up, we had fought this hard, now holding our baby in our arms, we were not going to let her go. Not without a fight. Angry, sad and in shock with the support of friends and family we vowed to fight not give up we could not phantom letting Baby Dorothea die. We began calling and emailing lawyers and human rights activists. That evening we received a call from Mr. Yogi Amin a solicitor and human rights activist who quickly jumped to action sending letters to the Hospital and doctors whilst preparing barristers to go to court seeking an order from a judge to proceed with surgery. By 1 pm the following day the hospital called for a meeting where surgery was agreed to proceed but we were warned of the extremely high mortality rate and were asked to sign a disclosure of a long List of severe life altering conditions and risks that Baby Dorothea would almost surely face.

Like all other nights we spent the night by Dorothea's side and when dawn reached we expressed to her excitement of this special day, the day she would receive a "new Ferrari engine" in her heart, we laughed and loved her and detailed all the fun that were still to have throughout her life. She was aware, her made deep eye contact and loved every second of her cuddles. She was always grasping at our fingers always looking at us and smiling, she felt loved.

Dorothea's surgery lasted all day and it felt like an eternity, around 3:30 pm, we were happy that we had not received a call telling us something went wrong but we could no longer wait, we called the Intensive care unit and asked if they had heard from the surgical team.  We screamed in delight and cried from joy when we heard that her surgery was successful, her heart was working, she was stable and that she was getting ready to be transported to ICU. 

There was not a dry eye in the Intensive Care Unit as we ran in, nurses embraced us in tears and joy. Dr Guido was very emotional and overjoyed as he shared the success of the surgery and his amazement.  We were quickly led to her bed side and amongst a team of people still working on Dorothea, we embraced her in tears and joy, we were beyond ourselves.

Within 5 minutes everything changed, a doctor started trying to stimulate Dorothea's hand and calling her name, alarms started sounding form monitors and red lights flashing when a doctor yelled "cardiac arrest" a wall alarm was sounded, a siren went off in the ICU and an army of doctors and nurses flooded the room. We were rushed away into an empty room confused in shock and completely lost for words. Within minutes a senior nurse informed us that Dorothea's heart had stopped and they were trying to resuscitate her, they would keep us updated. 15 minutes passed an again we were told her heart was still not working, they were still doing CPR. 15 minutes later no change. 45 minutes passed and there were no more updates. Zofia and I were held our faith, in our initial silence we both simultaneously had made peace with God, if 7 days was all the time that God would allow us with Dorothea, they were the best 7 days of our lives, but we prayed for a miracle, we prayed for GOD to give us a lifetime with our beautiful daughter. We had faith and we would not let go. After 1 hour and 5 minutes a nurse walked in and told us that  they were able to resuscitate Dorothea and  she was placed on an ecmo machine, a giant bypass type machine that did all the work for the heart and a ventilator. Our Miracle was granted `Dorothea was alive. We were warned it was a huge step back and she faced a huge possibility of  brain damage and other life critical complications. We ignored we were happy she was alive.

Dorothea was on ecmo for 5 days, not only with full brain activity, but with her eyes open and aware, she never let go of our hands (fingers) and was showered with love and affection by Zofia and I and was cared by the most hard core, amazing, dedicated and skilled nurses and doctors in the world.

It took 5 weeks and 5 difficult surgeries for our dear surgeon Dr. Loup to close Dorothea's open chest. Each surgery dancing a fine line of life and death. Nurses and Doctors faced tremendous challenges in stabilising and saving her life during these surgeries.

She also battled through Dialysis, two collapsed lungs and 2 months on a ventilator. but on August 26th she was extubated and came off the ventilator. Her resilience and appetite for Life astonished the entire medical and nursing teams, within 72 hours we were discharged for the PICU and moved to a long care ward to their high dependency unit where we spent 2 weeks. Dorothea's key to her survival during September, in this inter stage to be ready for her next life saving surgery was to gain weight and get strong. Weighing only 2.5 kg, frail still unable to feed on breastmilk due to complications, it was expected to take many many months to get to normal targeted weight. However to the disbelief and shock of all doctors she managed to gain 1kg in less than month, her weight chart is astonishing. 

As of today October 14th now consuming ungodly amounts of breast milk she now weighs 4.52kg, she is not attached to any drains or machines other than regular BP and saturation checks, she is free of everything no supported air. Although on a slew of medications, her mri has shown there is no brain damage whatsoever and we are even allowed to take her out of the hospital for an hour to the park. One of us is always by her side 24-7, we sleep bedside and we alternate shifts so we can care for the other children.

Although we are living a dream and a true miracle to enjoy these days and nights with Baby Dorothea, sadly the fight to save her life is just beginning she needs a further Glenn surgery along with a very complex surgery for her her complex anatomy in order to ensure she can survive. To complicate matters worse the acquisition of Royal Brompton Hospital resulted in our godsend surgeon Dr Guido to have to leave the hospital and is heading back to Italy.

We tried in vain to battle the hospital executives to keep Dr Guido or allow him to return for surgeries not just for us but for the dozens of babies that need his surgery. Losing Dr Guido means Dorothea now falls back to the care of the Evelina executives and doctors that were so keen to terminate before birth and cancelled the surgery on the eve it was supposed to take place. 

With 3,500 surgeries on Dr Guido 1,500 which have taken place at the Royal Brompton Hospital he has led the top UK spot for surgical outcomes and has saved hundreds of babies lives like Dorothea.

Our options to find another Dr Guido here in the UK are slim to none. Although Dorothea may reach the optimal weight of 5 kg, she would not yet reach the ideal 5-6 months of age. 

This leaves us with the only choice to go to Italy and have Dr Guido perform the critical life saving surgeries that Dorothea needs. The cost is substantially less than in the US where the surgery, ICU and care costs can as we know amount to millions. We estimate the cost in Italy to be around £50K for surgery and between air ambulances, ICU stay, specialty treatments, medications and all costs including post surgery and recovery to be around and additional £100k-£140k. We have 70-90 days, by late December to early January to be in Italy and save our daughter's life.

As before all donations are managed by the Tree of Hope an established (30 years) UK charity. Although we are both not working, and will have to pray for another miracle for family costs, this entire raise is for Dorothea's costs around medical treatment and related expenses.

We are grateful for all the help you have provided to get us through this incredibly difficult journey, your emails and words of support, prayers and donations have made this miracle possible. We have no choice but to ask for help, we didn't expect to have to be fighting this battle for care this far in the game, but we will not stop, we will save Baby Dorothea and we will bring her home. We have faith in God, in Dorothea and in Dr Guido and all the amazing nurses and doctors.

We humbly ask for as many prayers, good wishes and energy towards Dorothea and for those that can help any contribution possible to get her the life saving help she needs. 

As next step, Dorothea had a CT scan and the 18th of October there should be a better understanding of the complexity of the surgery.

We thank you in advance for your kindness, empathy and help.

The loving parents of Dorothea Fenrych-Velez

Rob & Zofia

NOTE: If surgery were not to take place or cost less 100% of the unused funds would go to the care of Baby Dorothea and any excess to the Tree of Hope to help other children get the surgeries and medical treatment they need.